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Li JL, Washington-Nortey M, Kifle TH, Cotier F, Hoekstra RA. The Role of Extended Family Members in the Lives of Autistic Individuals and Their Parents: A Systematic Review and Meta-Synthesis. Clin Child Fam Psychol Rev 2025; 28:507-539. [PMID: 40392445 PMCID: PMC12162707 DOI: 10.1007/s10567-025-00525-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/30/2025] [Indexed: 05/22/2025]
Abstract
Extended family members play an important role in meeting the care needs of autistic individuals, yet family support policies and practices often overlook this role. We aimed to synthesise qualitative research on the role played by extended family members in the lives of autistic individuals and their parents and identify cultural patterns. We searched eight databases and selected relevant studies through a two-stage screening process. We synthesised the results and discussions described in the selected studies using template analysis. The review included 42 studies (40 qualitative; 2 mixed methods), reporting on 1048 parents and 2140 grandparents. While aunts, uncles, and cousins were not direct participants, their roles were described in participants' narratives. Three main themes were developed: (1) types of support from extended family members, including emotional, financial, instrumental, and informational support; (2) unhelpful or lack of support from extended family members, including misunderstanding about autism, absence of support with caregiving, and negative attitudes and discriminatory behaviours against autistic individuals as well as their parents; (3) factors influencing the role of extended family members, including individuals, family unit, family interaction characteristics, and a journey towards acceptance and cultural influences. Novel findings on the influence of culture suggested in cultures highly valuing family interdependence, extended relatives play a more prominent support role, yet the emphasis on family reputation might hinder the acceptance of autism by extended relatives. Based on a family systems approach, we recommend priorities for intervention development and clinical practice to support the effective involvement of extended family members.
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Affiliation(s)
- Jia-Ling Li
- Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
| | - Melissa Washington-Nortey
- Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Tsegereda Haile Kifle
- Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Francesca Cotier
- Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Rosa A Hoekstra
- Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
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Pye K, Gold L, Le HND, Iacono T. "What My Son Needs Is Me. What I Need Is... Guidance": Caregiver Perspectives About Early Autism Supports Amid Changing Attitudes and Policies. J Autism Dev Disord 2025:10.1007/s10803-025-06850-8. [PMID: 40347382 DOI: 10.1007/s10803-025-06850-8] [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: 04/15/2025] [Indexed: 05/12/2025]
Abstract
The effectiveness of early supports for Autistic children has predominantly been measured in terms of changes in their development, such as language, cognition or adaptive behaviour. The benefits of early supports to children include, and are moderated by, effects on caregivers and families. We sought to understand perspectives of primary caregivers of children who, whether or not formally diagnosed, they believed to be Autistic, about the value of different aspects of early supports. We interviewed 19 caregivers, selected from a larger survey sample (n = 95) to cover a range of backgrounds and experiences accessing supports. We conducted reflexive thematic analysis to identify themes. We identified four themes through reflexive thematic analysis. Themes reflected common aspirations to optimise their children's future wellbeing. Despite public funding for early supports, families' other resources (especially time and mental load) were under pressure, impacting other activities such as employment and family relationships. Participants preferred supports that were adaptable to their changing needs, neuroaffirming and practical; they particularly valued authentic emotional support from therapists and sought providers they could trust. Our analysis suggests that family experiences of accessing supports might be just as important as the intended outcomes.
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Affiliation(s)
- Katherine Pye
- Institute of Health Transformation, School of Health and Social Development, Deakin University, Geelong, Australia.
- School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia.
| | - Lisa Gold
- Institute of Health Transformation, School of Health and Social Development, Deakin University, Geelong, Australia
| | - Ha N D Le
- Institute of Health Transformation, School of Health and Social Development, Deakin University, Geelong, Australia
| | - Teresa Iacono
- La Trobe Rural Health School, La Trobe University, Bendigo, Australia
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Zhang JJ, Wang EN. Enhancing autism care through remote support: A family-centered approach. World J Psychiatry 2025; 15:102645. [PMID: 40309586 PMCID: PMC12038657 DOI: 10.5498/wjp.v15.i4.102645] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/25/2024] [Revised: 01/16/2025] [Accepted: 02/12/2025] [Indexed: 03/25/2025] Open
Abstract
Autism spectrum disorder (ASD) poses significant challenges for families, with limited access to specialized care being a critical concern. The coronavirus disease 2019 pandemic has accelerated the adoption of remote support, highlighting its potential to enhance family-centered care for children with ASD. In this editorial, we comment on the article by Lu et al, emphasizing the effectiveness of integrating remote support courses with traditional caregiver-mediated interventions. We further explore the benefits of remote support in delivering family-centered care, summarize the essential components of effective family-centered remote support, outline key considerations for implementation, and discuss potential future research directions. We conclude that family-centered remote support has the potential to significantly improve outcomes and quality of life for individuals with ASD and their families.
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Affiliation(s)
- Jun-Jie Zhang
- School of Psychology, Northwest Normal University, Lanzhou 730070, Gansu Province, China
| | - En-Na Wang
- School of Psychology, Northwest Normal University, Lanzhou 730070, Gansu Province, China
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Zheng H, Sun M, Wang A, Tang Q, Zhang Y, Lu J, Chen G. Modifiable Factors Underlying Caregivers' Psychological Support Needs in Pediatric Disability: Through the Lens of Psycho-Behavioral and Social-Environmental Interactions. Healthcare (Basel) 2025; 13:625. [PMID: 40150475 PMCID: PMC11942237 DOI: 10.3390/healthcare13060625] [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: 01/21/2025] [Revised: 02/16/2025] [Accepted: 02/28/2025] [Indexed: 03/29/2025] Open
Abstract
Background/Objectives: Childhood disability is a major stressor for caregivers. There are many problems and challenges in relation to satisfying the psychological support needs of caregivers. This study aims to explore the modifiable psycho-behavioral and social-environmental factors of psychological support needs and need satisfaction, their interaction effects, and their configuration paths. Methods: This was a cross-sectional survey of 363 caregivers using instruments such as the psychological support needs subscale of the Care Needs Assessment Tool for Children with Disabilities. Multivariable logistic regression with interaction terms and crisp-set qualitative comparative analysis were performed. Results: The overall rate of psychological support needs was 78.29%, and the overall need satisfaction was 49.94%. Multivariable logistic regression analysis showed that the caregiver's need was mainly influenced by anxiety, while need satisfaction was primarily predicted by public policy support and social attitudes. There was an interaction effect between caregiver anxiety and social attitude on need satisfaction. Qualitative comparative analysis indicated that six paths were identified as potentially leading to high levels of psychological support need, while five paths were associated with low levels of need satisfaction. Conclusions: The psychological support need rate among caregivers was high, and the level of need satisfaction was low. There were significant differences in psychological support needs and need satisfaction among different psycho-behavioral and social-environmental characteristics. It is recommended that caregivers with negative emotions be given more attention. The enhancement of social attitudes and the adoption of more supportive policies will contribute to the improvement of need satisfaction.
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Affiliation(s)
- Hongying Zheng
- School of Public Health, Fudan University, Shanghai 200032, China; (H.Z.); (M.S.); (Q.T.)
- China Research Center on Disability, Fudan University, Shanghai 200032, China
| | - Mei Sun
- School of Public Health, Fudan University, Shanghai 200032, China; (H.Z.); (M.S.); (Q.T.)
- China Research Center on Disability, Fudan University, Shanghai 200032, China
| | - Anni Wang
- School of Nursing, Fudan University, Shanghai 200032, China;
| | - Qi Tang
- School of Public Health, Fudan University, Shanghai 200032, China; (H.Z.); (M.S.); (Q.T.)
- China Research Center on Disability, Fudan University, Shanghai 200032, China
| | - Yaping Zhang
- Occupational Medicine Center, Shanghai Institute of Occupational Disease for Chemical Industry, Shanghai 200041, China;
| | - Jun Lu
- School of Public Health, Fudan University, Shanghai 200032, China; (H.Z.); (M.S.); (Q.T.)
- China Research Center on Disability, Fudan University, Shanghai 200032, China
| | - Gang Chen
- School of Public Health, Fudan University, Shanghai 200032, China; (H.Z.); (M.S.); (Q.T.)
- China Research Center on Disability, Fudan University, Shanghai 200032, China
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Jordan P, Wallace-Watkin C, Tupou J, Pillar S, Waddington H. 'I wouldn't want one or the other': Understanding parents' preferences for direct support or parent coaching for young autistic children. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2025; 29:740-753. [PMID: 39394944 PMCID: PMC11894850 DOI: 10.1177/13623613241287300] [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: 10/14/2024]
Abstract
There has been considerable research into the barriers and facilitators of coaching parents of autistic children. However, little is known about parents' preferences for this approach compared to support provided directly by a clinician to an autistic or potentially autistic child. This study aimed to examine parents' relative preferences for parent coaching and direct clinician support. A total of 22 families who had received both approaches for their autistic child quantitatively indicated which they preferred. We then used semi-structured interviews with 11 of these participating parents to further investigate the reasons underlying these preferences. We used multiple methods to ensure trustworthiness and credibility. Four themes were identified through template analysis: (1) 'I wouldn't want one without the other', (2) 'It forced me outside my comfort zone', (3) 'It's just about different types of learners' and (4) 'If our child is happy, then we are happy'. Overall, results indicated that parents appreciated characteristics of both approaches and felt that they complimented each other in helping themselves and their child. However, when forced to choose, parents generally expressed a preference for direct support. Many parents discussed their belief that their child experienced more enjoyment and progressed further through direct support. These findings emphasise the importance of honouring families' preferences in the delivery of supports.Lay abstractProfessionals often support autistic children by working with them directly (direct support) or by coaching their parents. We know a lot about what parents think about parent coaching, but we do not know as much about what they think about direct support. We also do not know whether parents prefer parent coaching or direct support. The current study involved 22 parents who each received 2 h a week of direct support for their autistic child and up to 1 h a week of parent coaching for 6 months. At the end of 6 months, all these parents indicated in a survey whether they preferred parent coaching or direct support. Eleven of these participating parents also chose to take part in an interview to understand more about these preferences. Our findings suggest that parents generally liked both supports and believed they worked well together; however, they preferred direct support over parent coaching. While parents think that both approaches are beneficial, there are strengths and challenges of each. These findings emphasise the importance of parent choice in the delivery of support. It may also be possible to adapt both approaches to address some of the identified challenges and improve the whole family's experience.
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Affiliation(s)
- Phoebe Jordan
- Te Herenga Waka – Victoria University of Wellington, New Zealand
| | | | - Jessica Tupou
- Te Herenga Waka – Victoria University of Wellington, New Zealand
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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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Mangum L, Copeland VC, Orebiyi I, Taylor S, Jones T, Nathan J, Nathan BR, Eack SM. Parental Perceptions of Access to and Utilization of Services for Autistic Children in African American Families: An Exploratory Study. J Racial Ethn Health Disparities 2025:10.1007/s40615-025-02283-2. [PMID: 39875762 DOI: 10.1007/s40615-025-02283-2] [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: 10/31/2023] [Revised: 12/30/2024] [Accepted: 01/02/2025] [Indexed: 01/30/2025]
Abstract
Autism spectrum disorder (ASD) occurs within all racial, ethnic, and demographic pediatric groups. However, Black children with ASD are diagnosed at later stages of their development, and as a result may not receive or may age out of early intervention services, and demonstrate poorer long-term outcomes, across a range of factors. African American parent's perceptions regarding access to and utilization of healthcare services for their autistic children vary. Research examining autism spectrum disorder and parental perceptions of service utilization among African American (AA) families is limited. This qualitative study aimed to understand the challenges African American parents face when initiating healthcare services for their autistic children. Eleven AA mothers of autistic children participated in individual semi-structured interviews. Six themes related to pediatric treatment needs, interactions with providers, and parents' roles as experts and advocates were generated. Implications for pediatric treatment needs of autistic children and areas of opportunity for providers working with AA autistic children are discussed.
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Affiliation(s)
- Laurenia Mangum
- Jane Addams College of Social Work, University of Illinois at Chicago, Chicago, IL, 60607, USA
| | | | - Ifeoluwa Orebiyi
- School of Social Work, University of Pittsburgh, Pittsburgh, PA, USA
| | - Shataya Taylor
- School of Social Work, University of Pittsburgh, Pittsburgh, PA, USA
| | - Taja Jones
- Tennessee State University, Nashville, TN, 37209, USA
| | | | | | - Shaun M Eack
- School of Social Work, University of Pittsburgh, Pittsburgh, PA, USA
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8
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Li F, Li Q, Shen Q, Zhang X, Leng H, Liu Y, Zheng X. The Support Needs of Parents of Children With Autism Spectrum Disorder: A Qualitative Study Based on the Nurturing Care Framework. J Adv Nurs 2024. [PMID: 39696911 DOI: 10.1111/jan.16681] [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: 07/17/2024] [Revised: 11/21/2024] [Accepted: 12/04/2024] [Indexed: 12/20/2024]
Abstract
AIM To explore the support needs of parents of children with autism spectrum disorder (ASD) in China under the guidance of the nurturing care framework (NCF). DESIGN A descriptive qualitative study design was used. METHODS Fourteen parents of 2-6-year-old children with autism were recruited for face-to-face individual interviews in Chongqing between July and November 2023. NVivo 12.0 software was used to manage the data, and a directed content analysis was performed to extract themes. RESULTS Five nurturing care needs of parents of children with autism were extracted, including acquisition of health- and disorder-related knowledge and information, maintenance of psychological and physical wellbeing, desire for individualised caregiver skills training, creation of multi-agent social support network, and accessibility of high-quality and coordinated services. CONCLUSION Parents of children with autism have multidimensional unmet nurturing care needs. It is crucial to address these needs and develop targeted family support programs with consideration of the extracted need components. IMPLICATIONS FOR PROFESSION AND/OR PATIENT CARE This study implies that health education, parental empowerment and psychological support should be prioritised in future family support programs. The findings also emphasise the importance of establishing a cross-departmental coordination mechanism and building a multi-agent social support network for families of children with autism. IMPACT This study expands our understanding on the support needs of families of children with autism and enriches the theoretical connotation of nurturing care framework, and the results may inform the development of tailored support programs for families of children with autism in China. REPORTING METHOD The results are reported in accordance with the reporting guidelines of the Consolidated Criteria for Reporting Qualitative Studies (COREQ). PATIENT OR PUBLIC CONTRIBUTION No patient and public contribution.
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Affiliation(s)
- Fei Li
- Department of Nursing, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, Chongqing, China
- Department of Pediatric Research Institute, Children's Hospital of Chongqing Medical University, Chongqing, China
| | - Qinling Li
- Department of Internet Hospital Office, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, Chongqing, China
| | - Qiao Shen
- Department of Nursing, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, Chongqing, China
- Department of Pediatric Research Institute, Children's Hospital of Chongqing Medical University, Chongqing, China
| | - Xin Zhang
- Department of Nursing, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, Chongqing, China
- Department of Pediatric Research Institute, Children's Hospital of Chongqing Medical University, Chongqing, China
| | - Hongyao Leng
- Department of Nursing, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, Chongqing, China
- School of Public Health, Chongqing Medical University, Chongqing, China
| | - Yue Liu
- Chongqing Disabled Person Comprehensive Service Center, Chongqing, China
| | - Xianlan Zheng
- Department of Nursing, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, Chongqing, China
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Alegría PL, Landim SF, Pérez Valdés VA, Martínez Escudero N, Botelho JN, Branco BHM, Villagrán F, Sandoval C, Marques DCDS, Parrón Carreño T, González MM. Parental Stress in Autistic Children with Poor Oral Hygiene: A Pilot Study to Develop and Validate a Measurement Scale. Healthcare (Basel) 2024; 12:2215. [PMID: 39595414 PMCID: PMC11594058 DOI: 10.3390/healthcare12222215] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/11/2024] [Revised: 10/31/2024] [Accepted: 11/04/2024] [Indexed: 11/26/2024] Open
Abstract
Background/Objectives: Research indicates that children with autism spectrum disorder (ASD) exhibit a deficiency in skills and initiative when it comes to adhering to daily oral hygiene routines. This, in turn, increases the likelihood of oral pathologies, thereby placing a significant emotional strain on their parents. In addition to the typical stress they already experience, parents of children with ASD are also burdened with pediatric oral health issues. However, a review of the literature reveals a lack of studies measuring stress in parents of children whose oral health affects their autistic condition. This research aimed to design and to validate a stress scale for parents of autistic children with poor oral hygiene. Methods: The study used an exploratory, non-experimental design to validate and determine the reliability of the scale. Scale reliability was assessed through a cross-sectional pilot test to evaluate internal scale consistency, with a focus on item similarity. We used Aiken's V to estimate the validity of the scale, and Cronbach's α for calculating scale reliability. Calculations, estimations, and statistical analysis were conducted using SPSS. Results: Expert validation, a pilot test, and a cross-sectional, non-experimental design established the reliability of the scale. Conclusions: We conclude that the 20-item scale exhibits validity (0.95) and reliability (0.965), ensuring its applicability in future research.
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Affiliation(s)
- Pablo López Alegría
- Escuela de Terapia Ocupacional, Facultad de Psicología, Universidad de Talca, Talca 3465548, Chile; (P.L.A.); (S.F.L.)
| | - Síbila Floriano Landim
- Escuela de Terapia Ocupacional, Facultad de Psicología, Universidad de Talca, Talca 3465548, Chile; (P.L.A.); (S.F.L.)
- Graduate Program in Health Promotion, Cesumar University (UniCesumar), Maringá 87050-900, Brazil; (B.H.M.B.); (D.C.d.S.M.)
| | - Vidal Antonio Pérez Valdés
- Departamento de Pediatría Estomatológica, Facultad de Odontología, Universidad de Talca, Talca 3465548, Chile; (V.A.P.V.); (N.M.E.); (J.N.B.)
| | - Natalia Martínez Escudero
- Departamento de Pediatría Estomatológica, Facultad de Odontología, Universidad de Talca, Talca 3465548, Chile; (V.A.P.V.); (N.M.E.); (J.N.B.)
| | - Juliana Nunes Botelho
- Departamento de Pediatría Estomatológica, Facultad de Odontología, Universidad de Talca, Talca 3465548, Chile; (V.A.P.V.); (N.M.E.); (J.N.B.)
| | | | - Francisca Villagrán
- Programa de Doctorado en Ciencias Morfológicas, Facultad de Medicina, Universidad de La Frontera, Temuco 4811230, Chile;
| | - Cristian Sandoval
- Escuela de Tecnología Médica, Facultad de Salud, Universidad Santo Tomás, Osorno 5310431, Chile
- Departamento de Medicina Interna, Facultad de Medicina, Universidad de La Frontera, Temuco 4811230, Chile
- Núcleo Científico y Tecnológico en Biorecursos (BIOREN), Universidad de La Frontera, Temuco 4811230, Chile
| | | | - Tesifon Parrón Carreño
- Departamento de Enfermería, Fisioterapia y Medicina, Universidad de Almería, 04009 Almería, Spain;
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10
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Gyimah EM, Dassah E, Opoku MP, Nketsia W, Ntoaduro A, Tutu CO, Opoku C, Issaka Z, Mensah PA. From legislation to actual health service: evaluation of health provisions in the disability law of Ghana by adolescents with mobility and visual impairments and their families. BMC Health Serv Res 2024; 24:1314. [PMID: 39478543 PMCID: PMC11526718 DOI: 10.1186/s12913-024-11611-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/07/2024] [Accepted: 09/19/2024] [Indexed: 11/02/2024] Open
Abstract
BACKGROUND Despite Ghana's Persons with Disability Act, 2006 (Act 715) making provisions for access to healthcare services for adolescents with disabilities and their families, a corpus of literature has reported that persons with disabilities continue to face challenges in accessing healthcare services. However, the voices of adolescents with disabilities and their families are very scarce in such discourse. This study explored the experiences of adolescents with disabilities and their families in accessing healthcare services as per the provisions described in Ghana's Act 715. METHODS This study involved 45 participants, including 25 adolescents with disabilities and 20 family members from a municipality in Ghana. Employing a qualitative descriptive design, semi-structured interviews were conducted which was then analyzed thematically and interpreted using Critical Disability Theory. RESULTS The study identified two major categories of barriers to healthcare access: environmental (socio-economic difficulties, poor built environment, unavailability of rehabilitation services) and systemic (cultural beliefs, poor support at healthcare facilities and inadequate healthcare legislative provisions for families of children with disabilities). Despite legal provisions for free healthcare, participants faced significant financial barriers, with specialist services often not covered by the National Health Insurance Scheme. CONCLUSIONS The study calls for policy adjustments to fully cover specialist care under Ghana's National Health Insurance Scheme, establishment of local-level health assessment and resource centers, educational campaigns to change cultural perceptions, and training of healthcare workers to promote quality access to healthcare.
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Affiliation(s)
- Ebenezer Mensah Gyimah
- Department of Health Promotion and Disability Studies, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.
| | - Ebenezer Dassah
- Department of Global and International Health, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
| | - Maxwell Peprah Opoku
- Department of Special Education, United Arab Emirates University, Al-Ain, United Arab Emirates
| | - William Nketsia
- School of Education, Western Sydney University, Sydney, Australia
| | - Afua Ntoaduro
- Department of Interdisciplinary Studies, Akenten Appiah Menka University of Skills Training and Entrepreneurial Development, Kumasi, Ghana
| | - Clement Osei Tutu
- Department of Health Promotion and Disability Studies, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
| | - Cecilia Opoku
- Department of Health Promotion and Disability Studies, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
| | - Zakia Issaka
- Department of Health Promotion and Disability Studies, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
| | - Philip Atta Mensah
- Bonn Centre for Dependency and Slavery Studies, University of Bonn, Bonn, Germany
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11
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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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12
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Alegría PL, Landim SF, Branco BHM, Carmine F, Birditt K, Sandoval C, González MM. Dental Hygiene Challenges in Children with Autism: Correlation with Parental Stress: A Scoping Review. J Clin Med 2024; 13:4675. [PMID: 39200817 PMCID: PMC11355692 DOI: 10.3390/jcm13164675] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/02/2024] [Revised: 07/24/2024] [Accepted: 07/30/2024] [Indexed: 09/02/2024] Open
Abstract
Children diagnosed with autism spectrum disorders are shown to have poor periodontal health and dental hygiene habits. Extensive research has revealed that parents of children with autism spectrum disorder (ASD) frequently encounter heightened levels of stress, despair, and anxiety in comparison to parents of neurotypical children. The aim was to understand the relationship between the dental hygiene of children with ASD and the stress generated in their parents. Methods: A scoping review was carried out to identify any gaps or research opportunities for clinical practice concerning oral care and stress levels in parents in the PubMed, Medline, ScienceDirect, and Scopus databases. Results: A total of 139 articles were reviewed. Of these, only 10 met the selection criteria for inclusion. Our results reveal a lack of studies presenting evidence on the topic of poor dental hygiene in children with ASD and high stress levels in their parents. Discussion: There is ample evidence that children with ASD have poor dental hygiene, as well as higher levels of stress in their parents. However, little or no evidence links these two variables. Future studies should focus on this link, which could have practical implications for improving dental care for children with ASD.
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Affiliation(s)
- Pablo López Alegría
- Escuela de Terapia Ocupacional, Facultad de Psicología, Universidad de Talca, Talca 3465548, Chile; (P.L.A.); (S.F.L.)
| | - Síbila Floriano Landim
- Escuela de Terapia Ocupacional, Facultad de Psicología, Universidad de Talca, Talca 3465548, Chile; (P.L.A.); (S.F.L.)
- Graduate Program in Health Promotion, Cesumar University (UniCesumar), Maringá 87050-900, Brazil;
| | | | - Florencia Carmine
- Carrera de Medicina, Facultad de Medicina, Universidad de La Frontera, Temuco 4811230, Chile;
| | - Katherine Birditt
- Physiology Development and Neuroscience Department, University of Cambridge, Cambridge CB2 1TN, UK;
| | - Cristian Sandoval
- Escuela de Tecnología Médica, Facultad de Salud, Universidad Santo Tomás, Los Carreras 753, Osorno 5310431, Chile
- Departamento de Medicina Interna, Facultad de Medicina, Universidad de La Frontera, Temuco 4811230, Chile
- Núcleo Científico y Tecnológico en Biorecursos (BIOREN), Universidad de La Frontera, Temuco 4811230, Chile
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13
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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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14
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Battanta NK, Jenni OG, Schaefer C, von Rhein M. Autism spectrum: parents' perspectives reflecting the different needs of different families. BMC Pediatr 2024; 24:439. [PMID: 38982431 PMCID: PMC11232266 DOI: 10.1186/s12887-024-04912-x] [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: 03/13/2024] [Accepted: 06/26/2024] [Indexed: 07/11/2024] Open
Abstract
BACKGROUND Parents of children on the autism spectrum often face great challenges in the care of their child. Early support tailored to families' individual needs is therefore crucial for the development and quality of life of both children on the autism spectrum and their families. However, to date it is unclear whether the support available meets the parents' needs. STUDY AIM To investigate how the system of care, support, and therapies for children on the autism spectrum is perceived by their parents. METHOD A total of 57 parents of Swiss children on the autism spectrum participated in an online survey, and 20 of them participated in additional semi-structured interviews. RESULTS We found that parents of children on the autism spectrum may face substantial challenges and that social support is essential. Two thirds of the participating parents reported a long and difficult diagnostic process as challenging, and 60% expressed their need for closer follow-up after diagnosis and more support. Only one third of the parents stated that they manage their everyday lives well, whereas 17.5% felt exhausted, and more than half of the parents responded that they felt challenged. One fifth indicated that they had poor family support, and half reported substantial financial challenges. At the same time, most families also emphasize how important their neurodivergent children are to the family`s life together. CONCLUSION It is important that primary pediatricians not only initiate the diagnostic process, but also assess the different needs of the different family independent of the diagnosis and, if necessary, initiate adequate measures or guide parents to institutions in charge. Parents who do not actively express their individual needs should nevertheless be advised about support services, including financial counseling. The positive aspects mentioned by families can be emphasized and used as resources to improve their quality of life.
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Affiliation(s)
- Nadja K Battanta
- Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland
| | - Oskar G Jenni
- Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland
- Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland
- University of Zurich, Zurich, Switzerland
| | - Christina Schaefer
- Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland
| | - Michael von Rhein
- Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland.
- Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland.
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15
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Pozniak K, King G, Chambers E, Martens R, Earl S, Kraus de Camargo O, McCauley D, Teplicky R, Rosenbaum P. What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities. Disabil Rehabil 2024; 46:2670-2683. [PMID: 37419932 DOI: 10.1080/09638288.2023.2229733] [Citation(s) in RCA: 15] [Impact Index Per Article: 15.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/05/2022] [Accepted: 06/21/2023] [Indexed: 07/09/2023]
Abstract
PURPOSE Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS This article identifies components of healthcare that families find helpful and desirable.
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Affiliation(s)
- Kinga Pozniak
- CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Canada
| | | | - Elizabeth Chambers
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Rachel Martens
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Sarah Earl
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Olaf Kraus de Camargo
- CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Canada
| | - Dayle McCauley
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Rachel Teplicky
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Peter Rosenbaum
- CanChild Centre for Childhood Disability Research, Department of Pediatrics, McMaster University, Hamilton, Canada
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16
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Hughes J, Roberts R, Tarver J, Warters-Louth C, Zhang B, Southward E, Shaw R, Edwards G, Waite J, Pearson E. 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2024; 28:1231-1244. [PMID: 37712611 PMCID: PMC11067391 DOI: 10.1177/13623613231196084] [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: 09/16/2023]
Abstract
LAY ABSTRACT Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families.
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17
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Pozniak K, Rosenbaum P, Kwok EYL. Tasks performed by parents to enable telepractice for children with communication disorders: an interview study with clinicians and parents. Disabil Rehabil 2024; 46:1547-1558. [PMID: 37078372 DOI: 10.1080/09638288.2023.2201509] [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: 07/20/2022] [Accepted: 04/04/2023] [Indexed: 04/21/2023]
Abstract
PURPOSE Current service models in childhood rehabilitation promote the active participation of parents/caregivers in their children's therapies. The existing literature provides a limited understanding of the tasks and responsibilities parents undertake in their children's therapies, especially over telepractice. This study describes the tasks undertaken by parents in their children's speech therapy delivered virtually during the COVID-19 pandemic. METHODS A qualitative descriptive study was conducted with parents and speech-language pathologists, using open-ended interviews. Interviews were analyzed using a combination qualitative content analysis and thematic analysis. RESULTS Parents performed many tasks to enable telepractice. These tasks happened before (e.g., setting up both physical and virtual space for therapy), during (e.g., managing child's behavior), and after the virtual therapy session (e.g., carrying out home practice). While parents were willing to perform these tasks in order to help their children, some expressed the toll that it can take on them. CONCLUSIONS Compared to what is known from in-person visits, some of these tasks were novel and unique to telepractice. We recommend that clinicians and parents collaboratively decide on tasks and responsibilities to avoid burdening parents, and that they weigh the costs associated with performing these tasks against the benefits of teletherapy.IMPLICATIONS FOR REHABILITATIONParents perform many tasks to support their children's therapies, both during and outside of therapy sessionsTherapies delivered virtually require parents to assume additional tasks to support their childrenFor services to be Family-Centered, tasks and responsibilities need to be decided collaboratively between parents and clinicians.
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Affiliation(s)
- Kinga Pozniak
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
- Department of Pediatrics, McMaster University, Hamilton, Canada
| | - Peter Rosenbaum
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
- Department of Pediatrics, McMaster University, Hamilton, Canada
| | - Elaine Yuen Ling Kwok
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
- Department of Communication Sciences and Disorders, Northwestern University, Evanston, IL, USA
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18
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George-Levi S, Laslo-Roth R, Ben-Yaakov L. Differences in Interpersonal Resources and Risk Factors Among Mothers and Fathers of Children on the Autism Spectrum: A Serial Mediation Model. J Autism Dev Disord 2024; 54:1398-1410. [PMID: 36710298 DOI: 10.1007/s10803-023-05900-3] [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: 01/11/2023] [Indexed: 01/31/2023]
Abstract
Mothers and fathers of children on the autism spectrum may differ in their perception of their interpersonal resources and risk factors. Fathers (114) and mothers (507) of children on the autism spectrum participated in the study. Fathers (vs. mothers) reported lower interpersonal resources (interpersonal emotion regulation and perceived support from friends and formal sources, but not family) and higher levels of interpersonal risk factors (social, not emotional, loneliness). A serial mediation model indicated that parents' gender predicted interpersonal emotion regulation which in turn related to parents' social loneliness directly and indirectly through perceived social support. Fathers of children on the autism spectrum may differ from mothers in perceptions of interpersonal resources and risk factors related to parents' social belonging needs.
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Affiliation(s)
- Sivan George-Levi
- Department of Behavioral Sciences, Peres Academic Center, 10 Peres St, Rehovot, Israel.
| | - Roni Laslo-Roth
- Department of Behavioral Sciences, Peres Academic Center, 10 Peres St, Rehovot, Israel
| | - Lital Ben-Yaakov
- Department of Behavioral Sciences, Peres Academic Center, 10 Peres St, Rehovot, Israel
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19
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McDonnell AA, Page A, Bews-Pugh S, Morgalla KA, Kaur-Johal T, Maher M. Families' experiences of the Low Arousal Approach: a qualitative study. Front Psychol 2024; 15:1328825. [PMID: 38596338 PMCID: PMC11002904 DOI: 10.3389/fpsyg.2024.1328825] [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: 10/27/2023] [Accepted: 03/08/2024] [Indexed: 04/11/2024] Open
Abstract
Background Parents and carers supporting a family member presenting with behaviors of concern experience heightened stress. The Low Arousal Approach is a crisis management strategy which recognizes that stress, or physiological arousal, can be expressed through behaviors of concern. This approach aims to equip parents and carers to manage behaviors in a person-centered and non-confrontational way. There is a paucity of published research exploring the experiences of families applying this approach. Methods Seventeen parents who had received training in the Low Arousal Approach were interviewed to gain their perspectives on supporting their family members using this approach. Results Thematic analysis revealed themes relating to parental stress, which was related to external pressures, isolation, family stress, and challenges in their caring role. They described encountering negative narratives relating to self-criticism and negative judgments from others. Training in the Low Arousal Approach was related to being empowered through access to evidence, increased confidence, and increased ability to advocate for their family member's needs. Low Arousal was described as a "lifestyle" that enabled increased coping for the family unit as a whole. Discussion/conclusion Findings indicate that it is vitally important to recognize the views of parents and carers, and these are equally as important as the views of professionals. We must understand parents' and carers' needs in order to provide adequate support.
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Affiliation(s)
| | - Andrea Page
- School of Nursing and Midwifery, Birmingham City University, Birmingham, United Kingdom
| | | | | | | | - Mary Maher
- Studio 3 Clinical Services Limited, Alcester, United Kingdom
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20
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Krieger B, Moser A, Morgenthaler T, Beurskens AJHM, Piškur B. Parents' Perceptions: Environments and the Contextual Strategies of Parents to Support the Participation of Children and Adolescents with Autism Spectrum Disorder-A Descriptive Population-Based Study from Switzerland. J Autism Dev Disord 2024; 54:871-893. [PMID: 36538129 PMCID: PMC9765345 DOI: 10.1007/s10803-022-05826-2] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/11/2022] [Indexed: 12/24/2022]
Abstract
Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD.
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Affiliation(s)
- Beate Krieger
- School of Health Sciences, ZHAW Zurich University of Applied Sciences, Katharina Sulzer Platz 9, 8401, Winterthur, Switzerland.
- Department of Family Medicine, School Caphri, Maastricht University, Maastricht, The Netherlands.
| | - Albine Moser
- Department of Family Medicine, School Caphri, Maastricht University, Maastricht, The Netherlands
- Research Centre for Autonomy and Participation for People With Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands
| | - Thomas Morgenthaler
- School of Health Sciences, ZHAW Zurich University of Applied Sciences, Katharina Sulzer Platz 9, 8401, Winterthur, Switzerland
| | - Anna J H M Beurskens
- Department of Family Medicine, School Caphri, Maastricht University, Maastricht, The Netherlands
| | - Barbara Piškur
- Research Centre for Autonomy and Participation for People With Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands
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21
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Murphy AN, Pinkerton LM, Morford AE, Risser HJ. Parent-Therapist Partnership Survey: Parent Feedback and Psychometric Properties. J Autism Dev Disord 2024; 54:532-543. [PMID: 36329299 PMCID: PMC9633032 DOI: 10.1007/s10803-022-05782-x] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 09/28/2022] [Indexed: 11/06/2022]
Abstract
Parents of children with disabilities are an important part of their child's special education team. However, parents often have limited involvement in school-based therapies that are provided as part of a child's Individualized Education Program. The field lacks tools to assess the domain and extent of parent needs for optimal engagement in their child's special education therapies. Study one assessed the Parent-Therapist Partnership Survey's (PTPS) (formerly known as the Needs of Parents Questionnaire -School-Based Therapy Version) measure's clarity, fit, and comprehensiveness. Study two assessed the factor structure and internal consistency. Two factors emerged - Need to Be an Informed, Engaged Member of Their Child's Team, and Need for Support and Guidance. Internal consistency was 0.93 for the overall scale. The PTPS can serve as a powerful measure to better identify opportunities to engage parents in school therapeutic goals while improving parent-provider collaboration in school-based therapies.
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Affiliation(s)
- Ashley N. Murphy
- Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, 710 N. Lake Shore Drive, Suite 1200, 312-503-0475, 60611 Chicago, IL USA
| | - Linzy M. Pinkerton
- Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, 710 N. Lake Shore Drive, Suite 1200, 312-503-0475, 60611 Chicago, IL USA
| | - Alexandra E. Morford
- Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, 710 N. Lake Shore Drive, Suite 1200, 312-503-0475, 60611 Chicago, IL USA
| | - Heather J. Risser
- Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, 710 N. Lake Shore Drive, Suite 1200, 312-503-0475, 60611 Chicago, IL USA
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22
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Krieger B, Piškur B, Beurskens AJHM, Moser A. Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder-A descriptive population-based study from Switzerland. Child Care Health Dev 2024; 50:e13155. [PMID: 37487595 DOI: 10.1111/cch.13155] [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: 06/22/2022] [Revised: 01/21/2023] [Accepted: 06/28/2023] [Indexed: 07/26/2023]
Abstract
BACKGROUND Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare. OBJECTIVE This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5-11) and adolescents (age: 12-17) with ASD in Switzerland. METHOD A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. RESULTS Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. CONCLUSIONS This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.
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Affiliation(s)
- Beate Krieger
- School of Health Professions, ZHAW Zurich University of Applied Sciences, Winterthur, Switzerland
- Department of Family Medicine, Maastricht University, Maastricht, The Netherlands
| | - Barbara Piškur
- Research Centre for Autonomy and Participation for People with Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands
- Hasselt University, Faculty of Rehabilitation Sciences, Hasselt, Belgium
| | - Anna J H M Beurskens
- Department of Family Medicine, Maastricht University, Maastricht, The Netherlands
| | - Albine Moser
- Department of Family Medicine, Maastricht University, Maastricht, The Netherlands
- Research Centre for Autonomy and Participation for People with Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands
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23
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Smith J, Rabba AS, Cong L, Datta P, Dresens E, Hall G, Heyworth M, Lawson W, Lee P, Lilley R, Syeda N, Ma E, Wang J, Wang R, Yeow CT, Pellicano E. "They Were Saying That I Was a Typical Chinese Mum" : Chinese Parents' Experiences of Parent-Teacher Partnerships for Their Autistic Children. J Autism Dev Disord 2023; 53:4888-4900. [PMID: 36149615 PMCID: PMC9510549 DOI: 10.1007/s10803-022-05748-z] [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] [Accepted: 09/04/2022] [Indexed: 11/20/2022]
Abstract
Effective parent-teacher partnerships improve outcomes for autistic students. Yet, we know little about what effective partnerships look like for parents of autistic children from different backgrounds. We conducted interviews with 17 Chinese parents of autistic children attending Australian kindergartens/schools to understand their experiences. Parents appreciated the acceptance, opportunities and supports they received in Australia. They had high expectations of children; expectations not often shared by educators. Parents were respectful of teachers' expertise and polite and undemanding in interactions. Nevertheless, parents were frustrated by inconsistent teaching quality and inadequate communication. Navigating systems was also challenging and parents faced discrimination from teachers and their community. Recommendations include fostering open home-school communication, proactively seeking parents' expertise about children and explicitly scaffolding parents' self-advocacy.
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Affiliation(s)
- Jodie Smith
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia.
- School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia.
- Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia.
| | - Aspasia Stacey Rabba
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
- Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Australia
- School of Educational Psychology and Counselling, Faculty of Education, Monash University, Melbourne, Australia
| | - Lin Cong
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | - Poulomee Datta
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | | | - Gabrielle Hall
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | - Melanie Heyworth
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
- Reframing Autism, Sydney, Australia
| | - Wenn Lawson
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | | | - Rozanna Lilley
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | | | - Emily Ma
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | - Julia Wang
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | - Rena Wang
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | - Chong Tze Yeow
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
| | - Elizabeth Pellicano
- Macquarie School of Education, Macquarie University, 2109, Sydney, NSW, Australia
- Department of Clinical, Educational and Health Psychology, University College London, London, UK
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Mwinbam MM, Suglo JN, Agyeman YN, Kukeba MW. Family caregivers' experience of care with a child with cerebral palsy: the lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana. BMJ Paediatr Open 2023; 7:e001807. [PMID: 37407248 PMCID: PMC10335558 DOI: 10.1136/bmjpo-2022-001807] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/04/2022] [Accepted: 06/22/2023] [Indexed: 07/07/2023] Open
Abstract
INTRODUCTION Caring for a child with cerebral palsy may be more emotionally and physically exhausting than caring for a typical growing child. The family caregivers' perspective of this phenomenon needs exploring to facilitate the development of services. Our study explored the challenges family caregivers face with children with cerebral palsy in a resource-limited context in northern Ghana. METHODS We conducted a qualitative study underpinned by phenomenological principles where it is believed that the reality of a phenomenon is tied to caregivers' perspectives of their own experiences. In this study, we unearthed caregivers' experiences/challenges from their own perspectives. The method of data analysis used was to allow the issues to emerge from the data (inductive process) using the content analysis approach. We recruited 13 caregivers of children with cerebral palsy from the physiotherapy unit at Tamale Teaching Hospital, and conducted individual in-depth interviews supported by an open-ended topic guide. Interviews were audio recorded, transcribed, and translated and coded inductively before conducting a content analysis of the data when grouped into themes. RESULTS We have identified barriers to managing a child with cerebral palsy, including sociocultural barriers (values, attitudes and belief systems within society), economic challenges and immediate physical care burdens. Specific barriers included discrimination and isolation, lack of family and societal support, with poor access to health information and formal education. Others were lack of information on the cause and course of cerebral palsy, caregivers' loss of jobs, increased healthcare expenditure and struggles in lifting and moving children, which resonate with evidence-based multidimensional model of caregiving process and caregiver burden. CONCLUSION Caregivers have the arduous task of caring for a child with cerebral palsy. Social support interventions and policy initiatives that seek to ameliorate caregivers' finances and make formal education accessible to this marginalised child population may be beneficial in this context.
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Affiliation(s)
- Mavis Mallory Mwinbam
- Department of Nursing, Nadowli District Hospital, Upper West Region, Nadowli, Ghana
- Faculty of Paediatric Nursing, Ghana College of Nurses and Midwives (GCNM), Accra, Ghana
| | - Joseph Ngmenesegre Suglo
- Department of Nursing and Midwifery, Presbyterian University College, Abetifi, Ghana
- Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK
| | - Yaa Nyarko Agyeman
- Department of Population and Reproductive Health, School of Public Health, University for Development Studies, Tamale, Ghana
| | - Margaret Wekem Kukeba
- Department of Nursing, C K Tedam University of Technology and Applied Sciences, Navrongo, Ghana
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Yates L, Keville S, Ludlow A. The psychological impact of the secondary school transition on families of autistic children. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2023; 70:1207-1217. [PMID: 39712444 PMCID: PMC11660398 DOI: 10.1080/20473869.2023.2170004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/08/2022] [Revised: 01/13/2023] [Accepted: 01/13/2023] [Indexed: 12/24/2024]
Abstract
The transition from primary to secondary school is a stressful period for autistic individuals. However, less is known about parental experiences of the school transition, and its impact on the family. This study explored mothers' perspectives on the psychological impact of the transition to secondary school for their autistic children and their families. Using Interpretative Phenomenological Analysis, semi-structured interviews were analysed to explore the experiences of eight mothers of autistic children at the end of their child's first year in secondary school. The analysis revealed two superordinate themes: lack of available support and detrimental psychological impact on the family. Mothers reported the negative impact the transition had on themselves, their child, and the wider family. The importance of pre- and ongoing transition support was highlighted to reduce the concerns of children and their parents throughout the transition process. The findings highlighted the need for autism-specific individualized guidance, as well as considering the potential for transition issues to impact on siblings.
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Affiliation(s)
- L. Yates
- Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, UK
| | - S. Keville
- Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, UK
| | - A. Ludlow
- Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, UK
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Smith J, Rabba AS, Ali A, Datta P, Dresens E, Faragaab N, Hall G, Heyworth M, Ige K, Lawson W, Lilley R, Syeda N, Pellicano E. 'Somali parents feel like they're on the outer': Somali mothers' experiences of parent-teacher relationships for their autistic children. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2023:13623613221146077. [PMID: 36680459 DOI: 10.1177/13623613221146077] [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: 01/22/2023]
Abstract
LAY ABSTRACT Good relationships between parents and schools can improve autistic children's school success. There are many reasons why families from different cultural backgrounds find it harder to develop good relationships with schools, such as language barriers, discrimination and unfamiliarity with education systems. We know little about what 'good relationships' look like for these families. Here, we worked with a team of autistic and non-autistic researchers as well as an Advisory Group of Somali parents to conduct interviews with 15 Somali mothers of kindergarten and school-age autistic children. We asked mothers about their experiences of their child's education, communication with teachers and what a good relationship with schools would look like. We also asked how they felt the Somali community understood autism. We looked for common things that mothers said. We found that mothers were very proud of their children. They had high expectations, particularly about what children could do by themselves. Mothers found it frustrating that teachers had low expectations, that schools were not good at communicating with them and that autism-specific skills and experience were uncommon in schools. They also reported racist attitudes towards their children. Mothers experienced stigma and lacked resources, but support was gained from their daughters and their religion. Mothers themselves were proactively increasing community awareness and knowledge about autism in the hope that they and their autistic children would be valued and better supported. Our work has implications for how teachers and schools can work together with Somali parents to forge better futures for autistic children.
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Affiliation(s)
- Jodie Smith
- Macquarie University, Australia.,La Trobe University, Australia
| | | | | | | | | | - Nadia Faragaab
- Macquarie University, Australia.,Positive Partnerships, Australia
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Zakirova-Engstrand R, Roll-Pettersson L, Andersson K, Larsson H, Allodi Westling M, Hirvikoski T. Group Psychoeducational Intervention for Grandparents of Young Children with ASD: An Open Feasibility Study. J Autism Dev Disord 2023; 53:808-824. [PMID: 34247300 PMCID: PMC8272608 DOI: 10.1007/s10803-021-05189-0] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 07/02/2021] [Indexed: 11/28/2022]
Abstract
This initial open feasibility trial reports on feasibility and preliminary effectiveness of the manualized, group-based psychoeducational intervention for grandparents of preschool-aged children with ASD provided by the outpatient habilitation services in Stockholm, Sweden. One hundred and twenty non-custodial grandparents participated in a 6-h intervention program. The study demonstrated good feasibility: 114 (95%) grandparents completed both pre- and post-intervention measures and evaluations and reported high intervention acceptability. The results also indicated that grandparents increased their knowledge about ASD from pre-intervention to post-intervention, gained skills about strategies of supporting their grandchildren and adult children, and appreciated the opportunity to meet and share experiences with other grandparents. Follow-up with a randomized controlled trial design is needed to firmly establish efficacy of this intervention.
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Affiliation(s)
| | | | | | - Helena Larsson
- Habilitation & Health, Stockholm County Council, Stockholm, Sweden
| | | | - Tatja Hirvikoski
- Habilitation & Health, Stockholm County Council, Stockholm, Sweden ,Department of Women’s and Children’s Health, Center for Neurodevelopmental Disorders at Karolinska Institutet (KIND), Pediatric Neuropsychiatry Unit, Karolinska Institutet, Stockholm, Sweden ,Center for Psychiatry Research, Region Stockholm, Stockholm, Sweden
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Bent CA, Pellicano E, Iacono T, Hudry K. Perspectives from parents of autistic children on participating in early intervention and associated research. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2022:13623613221141540. [PMID: 36510841 DOI: 10.1177/13623613221141540] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
LAY ABSTRACT Support for autistic children early in life should help them to lead flourishing lives. However, many of the early intervention programmes for young autistic children are time-consuming and costly for families. These programmes are also often conducted in settings that are not closely matched to real life. We spoke to 23 parents (of 22 autistic children) to understand their experiences of their children's involvement in early intervention. Parents told us they were grateful for the opportunity, that they had 'hit the jackpot', and their children had 'gained so much' from the programme. They seemed to value the service because it made them feel safe and secure during an uncertain time in their children's lives. Parents told us they trusted staff, felt that they weren't 'doing it alone', and this 'took that pressure off' and helped them feel empowered. They also spoke of feelings of safety from being linked to the university research programme which offered 'accountability' and 'integrity'. Parents' comments showed a strong commitment to the early intervention model and staff - but also common feelings of abandonment and disempowerment as their child's time with the programme came to an end and they went 'back to the real world' and needed to find new supports for their children. These parents' insights should help to inform the design and delivery of community supports for preschool-aged autistic children and their families, which match the reality of their lived experiences.
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Evans K, Whitehouse AJO, D’Arcy E, Hayden-Evans M, Wallace K, Kuzminski R, Thorpe R, Girdler S, Milbourn B, Bölte S, Chamberlain A. Perceived Support Needs of School-Aged Young People on the Autism Spectrum and Their Caregivers. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 19:15605. [PMID: 36497683 PMCID: PMC9737194 DOI: 10.3390/ijerph192315605] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 09/30/2022] [Revised: 11/16/2022] [Accepted: 11/17/2022] [Indexed: 06/17/2023]
Abstract
With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5-17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.
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Affiliation(s)
- Kiah Evans
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- School of Allied Health, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
| | - Andrew J. O. Whitehouse
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
| | - Emily D’Arcy
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
- School of Psychological Science, University of Western Australia, Perth 6009, Australia
| | - Maya Hayden-Evans
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
- School of Psychological Science, University of Western Australia, Perth 6009, Australia
| | - Kerry Wallace
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
| | - Rebecca Kuzminski
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
| | - Rebecca Thorpe
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
| | - Sonya Girdler
- School of Allied Health, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
- Karolinska Institutet Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 171 77 Stockholm, Sweden
| | - Benjamin Milbourn
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
| | - Sven Bölte
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
- Karolinska Institutet Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 171 77 Stockholm, Sweden
- Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm, 104 31 Stockholm, Sweden
| | - Angela Chamberlain
- Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
- Autism CRC, Long Pocket, Brisbane 4068, Australia
- Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
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Wong TSM, Shorey S. Experiences of peer support amongst parents of children with neurodevelopmental disorders: A qualitative systematic review. J Pediatr Nurs 2022; 67:e92-e99. [PMID: 36115753 DOI: 10.1016/j.pedn.2022.09.004] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/06/2022] [Revised: 08/30/2022] [Accepted: 09/02/2022] [Indexed: 11/24/2022]
Abstract
PROBLEM Peer support is a form of social support that can address the complexities of support needs and challenges of parenting children with Neurodevelopmental Disorders (NDDs). However, there is paucity of research on the roles and influences of peer support experienced amongst parents of neurodivergent children. This qualitative systematic review therefore aimed to consolidate and synthesize the experiences of peer support amongst parents caring for neurodivergent children. ELIGIBILITY CRITERIA Articles were selected if they reported primary qualitative findings on the experiences of peer-support amongst parents of children diagnosed with at least one NDD as classified by DSM-5. SAMPLE Eleven articles were finalised and included in the review. RESULTS Four themes emerged: (1) reasons for seeking peer support, (2) different roles of peer support, (3) contributing elements of successful peer support, and (4) barriers against facilitating peer support. The findings of this review revealed that peer support was a valuable social support resource that met the complex support needs of parents. It enabled parents to provide quality care for their children whilst living with quality of life for themselves. CONCLUSIONS Peer support could be a valuable resource for parents of neurodivergent children as it could potentially enhance quality of life for parents while providing quality care for their children with complex needs. IMPLICATIONS Healthcare providers should integrate peer support as an adjunct resource of social support to help ease caregiver burdens of parents with neurodivergent children.
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Affiliation(s)
- Tiffany Shi Min Wong
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD11,10 Medical Drive, 117597, Singapore
| | - Shefaly Shorey
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD11,10 Medical Drive, 117597, Singapore.
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Panczykowski H, Murphy L, Heyward K, Hupp T. Lived experiences of parents of children with disabilities engaged in a support group incorporating equines. RESEARCH IN DEVELOPMENTAL DISABILITIES 2022; 128:104294. [PMID: 35780709 DOI: 10.1016/j.ridd.2022.104294] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/03/2022] [Revised: 06/15/2022] [Accepted: 06/21/2022] [Indexed: 06/15/2023]
Abstract
BACKGROUND Parenting a child with disabilities comes with significant challenges to parental quality of life, often resulting in decreased physical, mental, and social health when compared to parents who raise typically developing children. AIMS To address the needs of this population a 10-week interdisciplinary support group, based in attachment theory and incorporating equines, was developed called Taking the Reins of Self-care. METHODS AND PROCEDURES Designed to utilize the human-equine bond, the support group facilitated development of self-care strategies to increase quality of life of 6 parents of children with disabilities in the United States OUTCOMES AND RESULTS: Qualitative phenomenological analysis of field notes and parent interviews revealed the following themes: confirming the horse as an emotional confidant, creating a safe haven, re-affirming identity, nourishing the emotional self, and meeting the challenge. CONCLUSIONS AND IMPLICATIONS Analysis of Taking the Reins of Self-care substantiates the value of complimentary therapeutic approaches, attachment theory and the human-equine bond, and supports further investigation of the benefits of specialized parental support groups to enrich the experience of raising a child with disabilities.
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Lee J, Kaat AJ, Roberts MY. Involving Caregivers of Autistic Toddlers in Early Intervention: Common Practice or Exception to the Norm? AMERICAN JOURNAL OF SPEECH-LANGUAGE PATHOLOGY 2022; 31:1755-1770. [PMID: 35749738 PMCID: PMC9531930 DOI: 10.1044/2022_ajslp-21-00246] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/09/2021] [Revised: 11/30/2021] [Accepted: 03/31/2022] [Indexed: 05/26/2023]
Abstract
PURPOSE Family-centered practice (FCP) is a core component of early intervention (EI) associated with improved child and family outcomes, but little is known about community-based speech-language pathologists' (SLPs') inclusion of families in EI. Many caregivers of autistic children experience caregiving-related stress, making these intervention principles especially critical to the provision of optimal services. This study aimed to characterize EI SLPs' use of FCP coaching strategies and the quality of caregiver-SLP relationships. METHOD Participants included 25 families with an autistic toddler and their EI SLP. One intervention session for each SLP-family dyad was recorded and coded for the SLP's use of FCP coaching strategies. Caregivers and SLPs completed surveys about their working alliance, caregiver perceptions of family-centered care, and SLPs' approach to FCP. RESULTS SLPs primarily use child-directed strategies without caregiver involvement. When involving caregivers, SLPs infrequently use coaching strategies that are important for caregiver learning and collaboration (e.g., joint planning and guided practice with feedback). However, caregivers perceived their child's services to be highly family-centered, and caregivers and SLPs rated their working alliance to be of high quality. CONCLUSIONS The presence of strong caregiver-SLP working alliances alongside infrequent usage of effective coaching strategies indicates that SLPs may engage caregivers in ways that are perceived to be highly collaborative but are not optimal for caregiver involvement in all aspects of their child's services (goal setting and implementation of intervention). Consideration of family preferences and SLP beliefs about FCP will inform ways to disseminate FCPs needed to optimize families' capacities to support their child's development. SUPPLEMENTAL MATERIAL https://doi.org/10.23641/asha.20113550.
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Affiliation(s)
- Jordan Lee
- Roxelyn and Richard Pepper Department of Communication Sciences and Disorders, Northwestern University, Evanston, IL
| | - Aaron J. Kaat
- Department of Medical Social Sciences, Northwestern University, Evanston, IL
| | - Megan Y. Roberts
- Roxelyn and Richard Pepper Department of Communication Sciences and Disorders, Northwestern University, Evanston, IL
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Emotional and behavioral problems in children with autism spectrum disorder and psychological distress in their parents in Saudi Arabia: The moderating effect of marital relationship satisfaction. J Pediatr Nurs 2022; 65:e99-e106. [PMID: 35410735 DOI: 10.1016/j.pedn.2022.03.015] [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: 10/22/2021] [Revised: 03/27/2022] [Accepted: 03/30/2022] [Indexed: 11/22/2022]
Abstract
BACKGROUND There is a well-established association between emotional and behavioral problems in children with Autism Spectrum Disorder (ASD), unmet family support needs, and psychological distress in their parents. However, no studies hypothesized a buffering effect of marital relationship satisfaction. AIM The aim of this research was to investigate the moderating effect of marital relationship satisfaction in the associations among emotional and behavioral problems in children with ASD, unmet family support needs, and anxiety and depression of their parents in the context of Saudi Arabia. DESIGN AND METHODS This cross-sectional study recruited parents from five rehabilitation centers for children with ASD in Saudi Arabia. Data were collected with surveys completed online. A sample of 93 parents (84% female, 4.3% were 24 or younger, 36.2% between 25 and 34 years old, 40.5% between 35 and 44, and 14.7% between 45 and 54) of children with ASD was obtained. Two models of multiple regression analysis were performed to determine the relationships. RESULTS About 56% of the parents had anxiety symptoms and 60% had depressive symptoms. Emotional and behavioral problems of children and higher levels of unmet family support needs were associated with higher levels of anxiety in parents, and adaptive behavior of children was associated with reduced levels of depression in parents. Relationship satisfaction moderated the impact of children's emotional and behavioral problems on parental anxiety. CONCLUSION AND IMPLICATIONS The study highlighted the importance of marital relationship satisfaction in buffering the negative effects of ASD-related factors of children on the psychological well-being of their parents.
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Hasson L, Keville S, Gallagher J, Onagbesan D, Ludlow AK. Inclusivity in education for autism spectrum disorders: Experiences of support from the perspective of parent/carers, school teaching staff and young people on the autism spectrum. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2022; 70:201-212. [PMID: 38481460 PMCID: PMC10930116 DOI: 10.1080/20473869.2022.2070418] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 12/15/2021] [Accepted: 04/20/2022] [Indexed: 08/30/2024]
Abstract
Inclusive practices mean many children with autism spectrum disorders (ASD) attend mainstream education settings. To manage the stressors involved and access its benefits, support can be critical. Indeed, insufficient support can detrimentally impact wellbeing, longer-term development, and the inclusivity agenda. Expanding a limited evidence-base on educational support after diagnosis, focus groups and interviews were conducted for eight parent/carers of children with ASD, twelve special education needs (SEN) school staff, and four children with ASD attending mainstream school. An inductive thematic analysis on the data elicited three themes: a system overwhelmed by unmet needs, the impact on quality of life, and hope for the future. The overwhelming finding was a significant lack of education support for parent/carers and school staff, with the mainstream education system poorly designed and insufficiently resourced to facilitate the inclusion of children with ASD, particularly for those impacted by historic difficulties with access. The tireless work of parent/carers and frontline SEN educators fostered a sense of hope and engendered inclusivity for the children who participated, who felt supported. Given their buffering role, protecting and supporting parent/carer and SEN teacher wellbeing requires a policy shift supporting longer term inclusivity alongside improvements in funding streams and accessibility in provision.
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Affiliation(s)
- Laurence Hasson
- Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, Herts, United Kingdom
| | - Saskia Keville
- Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, Herts, United Kingdom
| | - Jen Gallagher
- Islington Child Adolescent Mental Health Service, Wittington Health NHS Trust, London, United Kingdom
| | - Dami Onagbesan
- Islington Child Adolescent Mental Health Service, Wittington Health NHS Trust, London, United Kingdom
| | - Amanda K. Ludlow
- Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, Herts, United Kingdom
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Enoch J, Dickinson C, Potts J, Subramanian A. An exploratory study on support for caregivers of people with vision impairment in the UK. Ophthalmic Physiol Opt 2022; 42:858-871. [PMID: 35416314 PMCID: PMC9320821 DOI: 10.1111/opo.12989] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/24/2021] [Revised: 03/26/2022] [Accepted: 03/28/2022] [Indexed: 11/27/2022]
Abstract
Purpose Many of the UK's 2.5 million individuals living with vision loss receive support from relatives or friends (so‐called ‘informal caregivers’). However, there is limited understanding of how caregivers of people with visual impairment (PVI) are, or feel, supported by UK healthcare/statutory services and charities. This exploratory study was conducted to explore caregivers' experiences and their suggestions for enhancing support. Methods Participants self‐identifying as UK‐based caregivers of PVI (N = 100) volunteered to undertake an online survey, distributed through charity partners. The survey was comprised of the Client Satisfaction Questionnaire‐8 (CSQ‐8, a validated, self‐report measure of satisfaction with support services), Likert‐type questions and two open‐ended, free‐text questions. Interview participants (N = 22) were then selected from survey respondents, and semi‐structured interviews were conducted to focus on caregivers' ideas for improving support. The Framework Method was used for inductive analysis of the free‐text question responses and interview data. Results The mean (SD) CSQ‐8 score was 21.60 (7.2), with no significant differences by demographic, relationship or vision‐related factors, likely limited by the small subgroup sizes. Qualitative data demonstrated the heterogeneity of participating caregivers' experiences, highlighting the importance of personalised support for caregivers. Many participants advocated enhancing informational, practical, emotional and social support for caregivers, and stressed the importance of accessible services and consistent points of contact to turn to for support and advice. Conclusions Although our sample was arguably better connected to support services than the general caregiver population, this study identified concrete suggestions to improve practical, emotional and peer support for caregivers of PVI.
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Affiliation(s)
- Jamie Enoch
- Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London, London, UK
| | - Christine Dickinson
- Division of Pharmacy & Optometry, University of Manchester and the Manchester Academic Health Sciences Centre, Manchester, UK
| | | | - Ahalya Subramanian
- Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London, London, UK
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Lipkin M, Crepeau‐Hobson F. The impact of the COVID-19 school closures on families with children with disabilities: A qualitative analysis. PSYCHOLOGY IN THE SCHOOLS 2022; 60:PITS22706. [PMID: 35572177 PMCID: PMC9088372 DOI: 10.1002/pits.22706] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2021] [Revised: 11/15/2021] [Accepted: 03/26/2022] [Indexed: 11/08/2022]
Abstract
The unprecedented school closures in response to COVID-19 have been associated with a number of negative impacts on students and their families. In addition to these difficulties, parents of students with disabilities are faced with prepandemic stresses and challenges that may be exacerbated by the school closures. This qualitative study aimed to investigate the experiences and struggles of parents of children identified with a disability during the COVID-19 school closures. The 15 participants were parents of children with a range of disabilities, including Autism, Down Syndrome, ADHD, and learning disabilities. The analyses revealed four major themes: school connection, virtual learning, potential impacts for students, and managing change. The experiences of these caregivers during the COVID-19 school closures and subsequent shift to remote learning have implications for educational and treatment planning. Recommendations for how school psychologists and school teams may best support students with disabilities and their families are included.
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Affiliation(s)
- Molly Lipkin
- School Psychology Program, School of Education and Human DevelopmentUniversity of Colorado DenverDenverColoradoUSA
| | - Franci Crepeau‐Hobson
- School Psychology Program, School of Education and Human DevelopmentUniversity of Colorado DenverDenverColoradoUSA
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37
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Milosevic S, Brookes-Howell L, Randell E, Williams-Thomas R, Delport S, Busse M, Gillespie D, Ahuja AS, McKigney AM, Glarou E, McNamara R. Understanding the support experiences of families of children with autism and sensory processing difficulties: A qualitative study. Health Expect 2022; 25:1118-1130. [PMID: 35303380 PMCID: PMC9122432 DOI: 10.1111/hex.13465] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/10/2021] [Revised: 02/13/2022] [Accepted: 02/23/2022] [Indexed: 01/26/2023] Open
Abstract
Background Support, such as information, advice and therapies, can play a vital role in the lives of families of autistic children. However, little is known about the support experiences of UK parents and carers. Aim To explore experiences of and access to support for families of children with autism and sensory processing difficulties, from the perspective of parents and carers. Methods Semi‐structured, timeline‐assisted interviews were conducted with parents/carers of 30 children aged 5–11, exploring experiences of support. Framework analysis was used to identify themes in the interview data. Results Support varied widely and was not accessed equitably. Specialist autism support, together with support from other parents and voluntary organizations, was perceived as more useful than statutory and nonspecialist provision. Unmet support needs included an ongoing point of contact for information and advice for parents, and access to direct therapy and specialist mental health provision for children. Conclusions Findings emphasize the need for a clear pathway of support following autism diagnosis, autism‐specific training for professional service providers and specialist provision tailored to the needs of autistic children. Patient or Public Contribution An advisory group of four parents of children with autism provided feedback on study procedures and materials, including participant information sheets and timeline completion instructions.
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Affiliation(s)
| | | | | | | | - Sue Delport
- School of Healthcare Sciences, Cardiff University, Cardiff, UK
| | - Monica Busse
- Centre for Trials Research, Cardiff University, Cardiff, UK
| | | | - Alka S Ahuja
- Aneurin Bevan University Health Board, Newport, UK
| | | | - Eleni Glarou
- Centre for Trials Research, Cardiff University, Cardiff, UK.,School of Medicine, Cardiff University, Cardiff, UK
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38
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Gore N, Bradshaw J, Hastings R, Sweeney J, Austin D. Early positive approaches to support (E-PAtS): Qualitative experiences of a new support programme for family caregivers of young children with intellectual and developmental disabilities. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2022; 35:889-899. [PMID: 35289031 PMCID: PMC9311085 DOI: 10.1111/jar.12993] [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] [Subscribe] [Scholar Register] [Received: 07/13/2021] [Revised: 02/01/2022] [Accepted: 02/04/2022] [Indexed: 11/30/2022]
Abstract
BACKGROUND Early Positive Approaches to Support (E-PAtS) is a co-produced and co-facilitated group programme that aims to provide early years support to family caregivers of children with Intellectual and Developmental Disabilities. METHOD Thirty-five caregivers who had attended E-PAtS groups took part in individual interviews or focus groups. Caregiver experiences concerning attendance of E-PAtS were explored, in relation to process variables and perceived outcomes. Interviews were thematically analysed. RESULTS Three major themes were identified: our group, evolving emotions, and positive approaches. Being with and being supported by other families was very important to caregivers. Families reported increased confidence and greater realisation of the need for self-care. Children were reported to show fewer behaviours that challenge and increases in adaptive skills. Findings corresponded to mechanisms and outcomes in the E-PAtS logic model. CONCLUSION E-PAtS shows promise as one way families and children with Intellectual and Developmental Disabilities can access early years support.
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Affiliation(s)
- Nick Gore
- Tizard Centre, Cornwallis North East, University of Kent, Canterbury, Kent, UK
| | - Jill Bradshaw
- Tizard Centre, Cornwallis North East, University of Kent, Canterbury, Kent, UK
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Muharib R, Dowdy A, Rajaraman A, Jessel J. Contingency-based delay to reinforcement following functional communication training for autistic individuals: A multilevel meta-analysis. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2021; 26:761-781. [PMID: 34961394 DOI: 10.1177/13623613211065540] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
LAY ABSTRACT Functional communication training, an intervention for challenging behavior rooted in principles of applied behavior analysis, has copious empirical support dating back to the mid-1980s for autistic individuals. Recently, there has been a concerted effort to thin reinforcement delivery during functional communication training using contingency-based delays that, in turn, are designed to enhance practicality and feasibility while not compromising efficacy. In this synthesis, we meta-analyzed the literature base with the goal of investigating both combined and across type effectiveness of contingency-based delays. We also aimed to investigate moderating variables that might impact intervention outcomes. Findings showed that contingency-based delays were effective for individuals with an autism spectrum disorder diagnosis and most effective when the delay incorporated some form of positive reinforcement. In addition, differential reinforcement of alternative-based delays was overall more effective when compared to differential reinforcement of other behavior-based delays. Noteworthy moderating variables found to impact contingency-based delay efficacy included the intervention dosage and the topography of behavior. We discuss these findings and highlight directions where additional empirical research is warranted to improve our understanding about contingency-based delays for individuals diagnosed with autism spectrum disorder.
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40
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Eggleston M, Eggleston K, Thabrew H, Hennig S, Frampton C. Order out of chaos? Autism spectrum disorder coordinators' impact on service delivery in New Zealand. Australas Psychiatry 2021; 29:644-647. [PMID: 33910392 DOI: 10.1177/10398562211009249] [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] [Indexed: 11/15/2022]
Abstract
OBJECTIVE To evaluate the impact of autism spectrum disorder (ASD) coordinators (ASDCs) on key aspects of the experience of obtaining an ASD diagnosis and post-diagnostic supports in New Zealand. METHOD Members of New Zealand ASD parent support groups were surveyed. RESULTS Of 516 parents, 41.3% had seen an ASDC. The majority were satisfied. Parents who saw ASDCs pre-diagnosis were more likely to be satisfied with the diagnostic process (p = .04) and saw fewer professionals before receiving a diagnosis (p = .04). Parents who had seen ASDCs post-diagnosis were more likely to be satisfied with post-diagnostic supports (p < .001) and their coordination (p < .001). CONCLUSIONS ASDCs are well regarded by parents and improve key aspects of the process of obtaining an ASD diagnosis and post-diagnostic supports. Given the particularly low rates of parent satisfaction with post-diagnostic supports (23%) and their coordination (19%), ASDCs may be of most value when employed post-diagnosis to assist parents in navigating key supports and co-developing comprehensive individualised care plans.
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Affiliation(s)
- Matthew Eggleston
- Mental Health Division, Canterbury District Health Board, Christchurch, New Zealand
| | - Katherine Eggleston
- Department of Psychological Medicine, University of Otago, Christchurch, New Zealand
| | - Hiran Thabrew
- Department of Psychological Medicine, The University of Auckland, Auckland, New Zealand
| | | | - Christopher Frampton
- Department of Psychological Medicine, University of Otago, Christchurch, New Zealand
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41
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Bhat A. Analysis of the SPARK study COVID-19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services. Autism Res 2021; 14:2454-2470. [PMID: 34591364 PMCID: PMC8578426 DOI: 10.1002/aur.2618] [Citation(s) in RCA: 43] [Impact Index Per Article: 10.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/12/2021] [Revised: 08/19/2021] [Accepted: 09/08/2021] [Indexed: 11/21/2022]
Abstract
Children with ASD receive a multitude of educational, medical, and therapeutic services. At the onset of the COVID‐19 pandemic, all of these services came to a complete halt following strict lockdowns. Many services have resumed in a hybrid format using face to face and virtual modes of delivery. This study describes findings from the COVID‐19 impact survey administered at the onset of the pandemic in a subgroup of families from the SPARK cohort (N = 6393), one of the largest ASD cohorts in the US. The differential early impact of COVID‐19 on various subgroups of children with ASD and their families was examined. Caregivers of children and adolescents with ASD between 19 months and 18 years completed an online survey inquiring about the impact of COVID‐19 pandemic on access to services, parent concerns about the same, impact on child's ASD‐related behaviors, child, and parent mental health, and the benefits/potential benefits of online/future online services. Analysis revealed that certain demographic (age, income/SES) and child‐related factors (repetitive behaviors, language, functional, cognitive, and motor impairments, and child's understanding), as well as parent's past mental health were associated with/predicted greater service disruptions, greater ASD‐related behaviors, and greater negative impact on parent mental health. In conclusion, younger children, children from low‐income families, and children with greater impairment severity (more severe repetitive behaviors, language, cognitive, function, language, and motor impairments) were more negatively impacted by the pandemic through service disruptions, increased ASD‐related behaviors, parent health/family impact, and found online interactions to be less beneficial.
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Affiliation(s)
- Anjana Bhat
- Department of Physical Therapy, University of Delaware, Newark, Delaware, USA.,Biomechanics & Movement Science Program, University of Delaware, Newark, Delaware, USA.,Department of Psychological & Brain Sciences, University of Delaware, Newark, Delaware, USA
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42
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Hermaszewska S, Sin J. End-user perspectives on the development of an online intervention for parents of children on the autism spectrum. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2021; 25:1234-1245. [PMID: 33423522 PMCID: PMC8264643 DOI: 10.1177/1362361320984895] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
LAY ABSTRACT Parent caregivers play an essential role in the lives of individuals on the autism spectrum. The demands of caregiving can have negative effects on the mental and physical wellbeing of parents. Different types of formal support have been developed to help parents to cope with caregiving; however, many parents struggle to access services due to limited availability and busy schedules. The Internet could offer parents more accessible and flexible support. We asked 17 parents what content they would like to include in an online resource. Parents told us about their experiences trying to access and use existing formal support and websites. They overwhelmingly supported the development of an online resource informed by their suggestions. Parents emphasised the need for easier access to information through educational components and direct access to healthcare professionals online. Parents also wanted help with finding existing services and reliable, locally relevant information. Parents stressed the need for a safe environment to meet and chat with other parents online. This research forms the first stage in the development process of an online health resource for parents.
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Affiliation(s)
| | - Jacqueline Sin
- University of Reading, UK
- City, University of London, UK
- St George’s, University of London, UK
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43
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Goh JX, Aishworiya R, Ho RCM, Wang W, He HG. A qualitative study exploring experiences and support needs of parents of children with autism spectrum disorder in Singapore. J Clin Nurs 2021; 30:3268-3280. [PMID: 33969552 DOI: 10.1111/jocn.15836] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/09/2021] [Revised: 04/08/2021] [Accepted: 04/13/2021] [Indexed: 11/30/2022]
Abstract
AIMS AND OBJECTIVE To explore the experiences and support needs of parents of children with recently diagnosed autism spectrum disorder (ASD) in Singapore. BACKGROUND Raising a child with ASD is challenging for parents, especially in the initial period following the diagnosis. Limited studies have focused on parents' perspectives. DESIGN A qualitative descriptive design study. METHODS Thirteen parents were recruited from a developmental and behavioural paediatric outpatient clinic of a tertiary hospital in Singapore from October-December 2018. Adult parents, who were primary caregivers of 2-10-year-old children diagnosed with ASD in the preceding 3 months to 2 years, were recruited. Semi-structured individual face-to-face interviews were conducted based on an interview guide. Thematic analysis was used to analyse the data. Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist was used for reporting. RESULTS Common themes were analysed using constant comparative method to generate results. Four themes emerged after 13 interviews: (1) adjusting psychologically, (2) changing lifestyle, (3) contending with hurdles to services and (4) needing informational, tangible and emotional support. CONCLUSIONS Findings suggested a need for more formal support networks, targeted resource platforms and accessibility of services to help support parents better after receiving a diagnosis of ASD in their child. RELEVANCE TO CLINICAL PRACTICE Enhancing current healthcare and social policies to improve the provision of standardised and targeted information to parents, establishing formal support networks, facilitating access to childcare services, and involving domestic helpers/nannies as dedicated caregivers and trainers could better support parents.
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Affiliation(s)
- Jing Xuan Goh
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.,Division of Nursing, National University Hospital, Singapore, Singapore
| | - Ramkumar Aishworiya
- Khoo Teck Puat-National University Children's Medical Institute, National University Health System, Singapore, Singapore.,Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
| | - Roger Chun Man Ho
- Department of Psychological Medicine, National University Hospital, Singapore, Singapore.,National University Health System, Singapore, Singapore
| | - Wenru Wang
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.,National University Health System, Singapore, Singapore
| | - Hong-Gu He
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.,National University Health System, Singapore, Singapore
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44
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Srinivasan S, Ekbladh A, Freedman B, Bhat A. Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware. Autism Res 2021; 14:1736-1758. [PMID: 33876563 DOI: 10.1002/aur.2514] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/14/2020] [Revised: 02/24/2021] [Accepted: 04/01/2021] [Indexed: 11/08/2022]
Abstract
The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24 years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD.
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Affiliation(s)
- Sudha Srinivasan
- Physical Therapy Program, Department of Kinesiology, University of Connecticut, Storrs, Connecticut, USA.,Institute for Health, Intervention, and Policy, University of Connecticut, Storrs, Connecticut, USA.,The Connecticut Institute for the Brain and Cognitive Sciences, University of Connecticut, Storrs, Connecticut, USA
| | - Annalisa Ekbladh
- Center for Disabilities Studies, University of Delaware, Newark, Delaware, USA
| | - Brian Freedman
- Center for Disabilities Studies, University of Delaware, Newark, Delaware, USA
| | - Anjana Bhat
- Department of Physical Therapy, University of Delaware, Newark, Delaware, USA.,Biomechanics & Movement Sciences Program, University of Delaware, Newark, Delaware, USA.,Behavioral Neuroscience Division, Department of Psychological and Brain Sciences, University of Delaware, Newark, Delaware, USA
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45
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Currie G, Szabo J. Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders. Int J Qual Stud Health Well-being 2020; 15:1725362. [PMID: 32048917 PMCID: PMC7034477 DOI: 10.1080/17482631.2020.1725362] [Citation(s) in RCA: 59] [Impact Index Per Article: 11.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/25/2022] Open
Abstract
Purpose: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children's medical, behavioural, and social needs within and across health, social, and family systems. The purpose of this study was to explore the parents' experience of caring for medical and social care needs for children with rare neurodevelopmental disorders.Methods: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews.Results: Interpretive analysis revealed four insights: (a) difference in children's behaviours and disease manifestations led to misunderstanding and vulnerability within social domains, (b) social taboo and stigma were experienced with rarity, (c) fragmented disconnected care from health and social systems impacted families, and (d) incomprehension from friends and family occurs when managing daily care.Conclusion: New interpretations and increased understanding of parents' experiences are required in supporting parents caring for children with complex needs. Understanding parents' experiences could reduce social isolation and exclusion, and mitigate appropriate and supportive practices and services within and across medical, social, and family systems.
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Affiliation(s)
- Genevieve Currie
- School of Nursing and Midwifery, Faculty of Health, Community and Education, Mount Royal University, Calgary, Alberta, Canada
| | - Joanna Szabo
- School of Nursing and Midwifery, Faculty of Health, Community and Education, Mount Royal University, Calgary, Alberta, Canada
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46
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Arnell S, Jerlinder K, Lundqvist LO. Parents' perceptions and concerns about physical activity participation among adolescents with autism spectrum disorder. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2020; 24:2243-2255. [PMID: 32713182 PMCID: PMC7543004 DOI: 10.1177/1362361320942092] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/23/2022]
Abstract
The parents of adolescents with autism spectrum disorder have a vital and proactive role in encouraging healthy physical activity habits, and they possess important knowledge about the adolescents’ needs when it comes to enhancing participation in physical activity. But promoting healthy physical activity habits in adolescents can be difficult. The purpose of this study was thus to describe parents’ perceptions of their adolescent child’s participation in physical activity and to describe the parental role in promoting such participation. Twenty-eight parents of adolescents aged 12–16 years with autism spectrum disorder were interviewed. The interviews were analyzed using an inductive content analysis approach. The parents described how challenging participation in physical activities could be for their adolescents. Despite this, they wanted to see their children participate more in physical activity but found the promotion of physical activity to be an overwhelming task that was difficult to cope with on their own. The results reveal a need for support and collaborative efforts among different actors to give these issues increased priority in order to promote the adolescents’ physical activity participation.
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47
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Families under pressure: stress and quality of life in parents of children with an intellectual disability. Ir J Psychol Med 2020:1-8. [DOI: 10.1017/ipm.2020.4] [Citation(s) in RCA: 20] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/06/2022]
Abstract
Objective
To evaluate stress and quality of life in parents of children with an intellectual disability (moderate–severe–profound), who attend a Child and Adolescent Mental Health Intellectual Disability Service (CAMHS ID), and to estimate the perceived levels of challenging behaviour and satisfaction with supports.
Methods
Data from children attending the service from 2014 to 2017, along with clinician and parent rating scales were collected.
Results
Most children had medical comorbidities, autism spectrum disorder (ASD), and challenging behaviours. Half had a diagnosis of a mental health disorder. Less than half received respite care. Challenging behaviours and ASD were found to be correlated with increased parental stress while perception of support was inversely correlated with stress. Intellectual disability, ASD, and parental stress were correlated with a decrease in perceived family quality of life.
Conclusions
This study concurs with previous studies, outlining that parents of children with intellectual disability, in particular, where there is a diagnosis of comorbid ASD and challenging behaviour, experience increased psychological distress and lower quality of life.
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48
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Neupane KG. Autism Spectrum Disorder: The Parental Experience. J Psychosoc Nurs Ment Health Serv 2020; 58:14-19. [PMID: 31710368 DOI: 10.3928/02793695-20191022-02] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/03/2019] [Accepted: 08/16/2019] [Indexed: 11/20/2022]
Abstract
In 2018, one in every 59 children was diagnosed in the United States with autism spectrum disorder (ASD). ASD is a developmental disability, which is a biologically based neurodevelopmental disorder that affects a child's social interaction and communication skills. ASD includes repetitive patterns and restrictive behaviors, which could last a lifetime. Limited awareness of disease condition, less effective coping strategies, and inadequate guidance lead to increased stress levels among parents of children with ASD. Parents experience peaks and troughs of social, emotional, and financial challenges as they go through a pre-diagnosis phase, diagnosis phase, and post-diagnosis phase. The shortage of health care providers and fragmentation of care in the health care delivery system delays early diagnosis and management of ASD. Primary care providers along with the U.S. physician workforce for patients with ASD are strongly encouraged to review their practices on early screening and diagnosis and have clearly planned out care for every child with a family-centered approach. [Journal of Psychosocial Nursing and Mental Health Services, 58(2), 14-19.].
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49
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Decroocq C, Soulas T, Lichtlé J, Sankey C, Engelberg A, Cappe E. Facilitators' perspectives on a psychoeducational program for parents of an autistic child. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2020; 24:1273-1285. [PMID: 31969009 DOI: 10.1177/1362361319899766] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
LAY ABSTRACT The recent increase of diagnosed cases of autism spectrum disorders has led to a considerable rise in the demands for autism-related services and interventions. Caring for an autistic child can be perceived as an enrichment, which coexists with stress in parents. Parents express the need to access relevant information about their child's difference, and parent support interventions appear to respond effectively to this demand, as they are knowledge-focused and offer indirect support to the child. The aim of this study was to capture the subjective experience of facilitators who implemented a psychoeducational program called Beyond PDD: Parental Skills within My Reach. This program is based on the acknowledged fact that parents of autistic children play a central role in their child's development. Its main goal is to help parents of autistic children under the age of 8 to identify, develop, and update their parenting competences. This program broaches different topics: (1) specific features of an autistic child, (2) post-diagnostic parental adjustment, (3) communication and social relationships, (4) importance of providing the child with a structured environment, and (5) parental emotions and perceptions that impact everyday life. Structured interviews of the facilitators provided insight on institutional support, issues related to the program itself, required and/or recommended professional background, personal experience and competences, and difficulties linked to recruitment and research criteria. Recommendations aiming to enhance program implementation and delivery were then created using facilitators' feedback on these aspects.
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50
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Blake L, Bray L, Carter B. "It's a lifeline": Generating a sense of social connectedness through befriending parents of disabled children or children with additional need. PATIENT EDUCATION AND COUNSELING 2019; 102:2279-2285. [PMID: 31327482 DOI: 10.1016/j.pec.2019.07.012] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/08/2019] [Revised: 07/01/2019] [Accepted: 07/10/2019] [Indexed: 06/10/2023]
Abstract
OBJECTIVES This study explored the influence of a parent-to-parent peer support scheme on the wellbeing of parents of disabled children or children with additional need who joined a befriending scheme. METHODS A longitudinal concurrent mixed methods (qualitative and quantitative) research design collected data (telephone interviews, Footsteps Tool, Resilience Scale-14) with 33 befriendees (1:1 or group support) and 33 befrienders at time-point 1 (TP1). TP2 data were collected from 20 befriendees and 16 befrienders 6-9 months after recruitment. RESULTS There was some improvement on average scores between TP1 and TP2 on both tools. The strongest evidence of change - 'a sense of positivity and hope' and 'connection, belonging and sharing' - was in the parents' reports of how the scheme helped them to build secure and valued social connections within a community of other parents who understood their lives. CONCLUSION Both the befriendees and befrienders reported the sense of hope and a feeling of belonging as key benefits that resulted from the social connections they gained from the scheme. PRACTICE IMPLICATIONS Social connectedness is likely to be a more useful concept than resilience in examining change.
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Affiliation(s)
- Lucy Blake
- Faculty of Health and Social Care, Edge Hill University, Ormskirk, UK
| | - Lucy Bray
- Faculty of Health and Social Care, Edge Hill University, Ormskirk, UK
| | - Bernie Carter
- Faculty of Health and Social Care, Edge Hill University, Ormskirk, UK.
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