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Cheng S, Li J, Li Q, Li X, Luo Y. Family quality of life of parents of children with intellectual disability: Do psychological stress and parental involvement matter? JOURNAL OF INTELLECTUAL DISABILITIES : JOID 2025; 29:331-348. [PMID: 38772005 DOI: 10.1177/17446295241254624] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/23/2024]
Abstract
Background: The psychological stress of parents and improving family quality of life (FQoL) are continuing concerns for families of children with intellectual disability. We need to identify further ways to reduce their stress and improve their FQoL in China. Method: Examine the interrelations between psychological stress, parental involvement, and FQoL for parents with intellectual disability in mainland China. Four hundred sixty seven parents of children with intellectual disability completed instruments measuring variables. Structural equation modelling (SEM) was employed to examine the interrelations. Results: Psychological stress, directly and indirectly, influenced parental involvement in FQoL. Physical and mental response (PMR) and risk awareness (RA) had a positive direct effect on FQoL, and optimistic hope (OH) had a negative effect on FQoL. Conclusions: Psychological stress affects FQoL of parents with children with intellectual disability in complex ways. Policies should be developed to help parents with children with disability decrease stress and develop scientific parental involvement.
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Affiliation(s)
- Sanyin Cheng
- School of Philosophy and Social Development, Shandong University, China
| | - Jiaqi Li
- School of Philosophy and Social Development, Shandong University, China
| | - Qiaoqiao Li
- School of Philosophy and Social Development, Shandong University, China
| | - Xuxu Li
- School of Philosophy and Social Development, Shandong University, China
| | - Yan Luo
- School of Philosophy and Social Development, Shandong University, China
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Gadot L, Segev E, Fine M. Work-Family Conflict, Parental Stress, and Work Centrality Among Parents of 0-4-Year-Old Children with Neurodevelopmental Disorders. J Autism Dev Disord 2025:10.1007/s10803-025-06889-7. [PMID: 40397049 DOI: 10.1007/s10803-025-06889-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/11/2025] [Indexed: 05/22/2025]
Abstract
This study compares work-family conflict (WFC), parental stress, and work centrality among parents of children aged 0-4 with neurodevelopmental disorders (NDDs), compared to parents of children of the same age without an NDD diagnosis. It also examines the role of parental stress as a mediator or moderator in the relationship between parental group (child with NDD vs. no NDD diagnosis) and WFC. 346 Israeli parents (155 with children with NDDs, 191 with children without an NDD diagnosis) completed online questionnaires. Parents of children with NDDs work less and have lower education and income. They experience greater parental stress and struggle more with WFC. An interaction effect between parental stress and WFC was observed, which was stronger among parents of children with NDDs. Parental stress mediated the relation between the parental group and WFC. The findings highlight the vulnerability of parents of children with NDDs in both the work and family domains, emphasizing the need for targeted support and policy considerations to address their unique challenges in achieving less WFC.
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Affiliation(s)
- Limor Gadot
- School of Social Work, Sapir Academic College, Sderot, Israel.
| | - Einav Segev
- School of Social Work, Sapir Academic College, Sderot, Israel
| | - Maayan Fine
- School of Social Work, Sapir Academic College, Sderot, Israel
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Apis A, Nunes BC, Vilella T, Pereira RCM, Pilotto RF, de Avó LRDS, Melaragno MI, Germano CMR, Melo DG. Quality of Life of Families Who Have Children With Cornelia de Lange Syndrome in Brazil: Opportunities for Improvement. Am J Med Genet A 2025:e64120. [PMID: 40395212 DOI: 10.1002/ajmg.a.64120] [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: 11/04/2024] [Accepted: 05/09/2025] [Indexed: 05/22/2025]
Abstract
This exploratory cross-sectional study aimed to estimate the family quality of life (FQoL) among 70 Brazilian families with children with Cornelia de Lange syndrome (CdLS). Data were collected using sociodemographic and clinical data forms, the Barthel index for activities of daily living, and the Beach Center FQoL Scale, a 5-point Likert tool that assesses the quality of life of families with children with disabilities across five domains. The Barthel index score was 41.8 ± 31.6, indicating severe dependence. The overall FQoL was 4.04 ± 0.47. Families reported higher scores in the family interaction (4.32 ± 0.50), parenting (4.23 ± 0.47), and disability-related support (4.16 ± 0.65) domains and lower scores in the emotional well-being (3.47 ± 0.80) and physical/material well-being (3.83 ± 0.74) domains. Parents living together, the father having completed higher education, and congenital heart disease explained 31.3% of the variance in the overall FQoL scores (R2 = 0.313, F(3,63) = 9.556, p < 0.001). The physical and material conditions of the families, and consequently their quality of life, could be improved through investments in social policies, better transportation, educational and healthcare services, and human and material resources. Lastly, we recommend providing psychological support to all family members to enhance emotional well-being and strengthen family resilience.
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Affiliation(s)
- Aline Apis
- Department of Medicine, Universidade Federal de São Carlos (UFSCar), São Carlos, São Paulo, Brazil
| | - Beatriz Carvalho Nunes
- Genetics Division, Departament of Morphology and Genetics, Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil
| | - Thainá Vilella
- Genetics Division, Departament of Morphology and Genetics, Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil
| | | | - Rui Fernando Pilotto
- Department of Genetics, Universidade Federal do Paraná (UFPR), Curitiba, Paraná, Brazil
| | | | - Maria Isabel Melaragno
- Genetics Division, Departament of Morphology and Genetics, Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil
| | | | - Débora Gusmão Melo
- Genetics Division, Departament of Morphology and Genetics, Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil
- Instituto Nacional de Genética Médica Populacional (INAGEMP), Brazil
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Merton C, Gwaltney A, Booman A, Potter SN, Wheeler AC, Barbieri-Welge RL, Horowitz LT, Hundley RJ, Bird LM, Tan WH, Sadhwani A. Parental stress and family quality of life in families of individuals living with Angelman syndrome. MEDRXIV : THE PREPRINT SERVER FOR HEALTH SCIENCES 2025:2025.05.07.25327165. [PMID: 40385450 PMCID: PMC12083606 DOI: 10.1101/2025.05.07.25327165] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/20/2025]
Abstract
Background Angelman syndrome (AS) is a developmental disorder caused by one of four molecular etiologies. Affected individuals have intellectual disability (ID), limited speech, seizures, and sleep problems. Parents of individuals with AS exhibit elevated stress compared to parents of individuals with other IDs. We examined parental stress and family quality of life (FQOL) over time in families of individuals living with AS. Methods Data were collected in a natural history study of AS. The Parenting Stress Index, Third Edition (PSI) and the Beach Center FQOL scale assessed parent stress and FQOL. Stress and FQOL were examined across AS molecular subtypes, and predictors were analyzed using a generalised linear model. Relationships between parental stress and FQOL were examined using Pearson correlations and a stepwise mixed-linear model approach. Results Our sample consisted of 231 families of individuals living with AS. Parental stress was clinically elevated and was highest in families of individuals with UBE3A mutations, while FQOL did not differ across subtype in most domains. Increasing age predicted a decrease in parental stress but did not predict FQOL. Elevated parental stress was additionally predicted by maladaptive behaviours and child male sex, while lower FQOL was predicted by child male sex, parent marital status, and family income. Parental stress had a small negative impact on FQOL. Conclusions Stress is elevated in parents of individuals with AS across subtypes and has a small negative impact on family quality of life. Interventions to reduce stress have potential to improve individual and family well-being.
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Bel-Fenellós C, Biencinto-López C, Orio-Aparicio C, da Silva-Mori X, Tenorio-Castaño JA, Lapunzina P, Nevado J. Family well-being in families with children and young people with Wolf-Hirschhorn Syndrome. RESEARCH IN DEVELOPMENTAL DISABILITIES 2025; 160:104974. [PMID: 40112494 DOI: 10.1016/j.ridd.2025.104974] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/29/2024] [Revised: 03/08/2025] [Accepted: 03/10/2025] [Indexed: 03/22/2025]
Abstract
BACKGROUND Wolf-Hirschhorn Syndrome (WHS) is a rare genetic disorder characterized by intellectual and physical disabilities. Families with a child affected by WHS face unique challenges that impact their quality of life. Understanding Family Quality of Life (FQoL) is crucial to developing effective support strategies. AIM The aim of this study was to evaluate FQoL in Spanish families with children diagnosed with WHS and to explore its relationship with sociodemographic factors and clinical characteristics, such as the size of genetic deletion. METHODS A descriptive, exploratory study was conducted with 34 parents of children with WHS, representing 50 % of the registered WHS families in Spain. The Family Quality of Life Survey (BCFQOL, 2003) was used to evaluate both satisfaction as importance regarding the five key dimensions of FQoL: emotional well-being, support and resources, family interaction, parental role, and physical/material well-being. RESULTS Families reported a higher importance than satisfaction in all dimensions of the FQoL. Family interaction received the highest satisfaction score (M = 4.09), while emotional well-being was the most affected (M = 3.02). No significant correlations were found between FQoL and genetic or sociodemographic variables. Only 27 % of the families expressed overall satisfaction with their FQoL, with stress relief and time availability being major concerns. CONCLUSIONS Emotional well-being is the most affected dimension in families with WHS children. There is a need for tailored support programs focusing on emotional and stress relief interventions. Strengthening family interactions and external support systems is crucial for improving FQoL.
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Affiliation(s)
- Cristina Bel-Fenellós
- Faculty of Education - Teacher Training Center, Complutense University of Madrid, Spain.
| | | | | | - Xana da Silva-Mori
- Institute of Medical and Molecular Genetics (INGEMM)-IdiPAZ, La Paz University Hospital. Madrid, Spain
| | - Jair Antonio Tenorio-Castaño
- Institute of Medical and Molecular Genetics (INGEMM)-IdiPAZ, La Paz University Hospital. Madrid, Spain; CIBERER, Biomedical Research Network Center for Rare Diseases, ISCIII, Madrid, Spain; ITHACA-European Reference Network-Hospital la Paz, Madrid, Spain
| | - Pablo Lapunzina
- Institute of Medical and Molecular Genetics (INGEMM)-IdiPAZ, La Paz University Hospital. Madrid, Spain; CIBERER, Biomedical Research Network Center for Rare Diseases, ISCIII, Madrid, Spain; ITHACA-European Reference Network-Hospital la Paz, Madrid, Spain
| | - Julián Nevado
- Institute of Medical and Molecular Genetics (INGEMM)-IdiPAZ, La Paz University Hospital. Madrid, Spain; CIBERER, Biomedical Research Network Center for Rare Diseases, ISCIII, Madrid, Spain; ITHACA-European Reference Network-Hospital la Paz, Madrid, Spain
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Novak-Pavlic M, Grgić V, Vlašić K, Ilicic AM, Dežmar D, Abramović I, Di Rezze B, Macedo L, Rosenbaum P. Examining the impact and implementation of the ENabling VISions And Growing Expectations (ENVISAGE) program in Croatia: a discourse analysis pilot study. Disabil Rehabil 2025; 47:1501-1511. [PMID: 39084314 DOI: 10.1080/09638288.2024.2375436] [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: 01/30/2024] [Revised: 05/13/2024] [Accepted: 06/01/2024] [Indexed: 08/02/2024]
Abstract
PURPOSE To explore the impact of the online ENVISAGE program for parents of children with neurodevelopmental disabilities (NDD) on parents' perception of themself, their child with a disability, and their family, as well as to explore experiences of participating in the program in Croatia. METHODS In this before-after discourse analysis study, participants took part in the five-week ENVISAGE program. There were two semi-structured interviews for each participant: within one month before and after participating in the program. The proportions of positive, neutral, and negative sentences about themself, their child, and their family from two interviews were compared on an individual and group level. The perceived changes and experiences with the program were also analyzed qualitatively. RESULTS Data from thirteen participants were included. From the three pre-determined discourse categories (self, child, and family), most changes were observed in parents' perception of self (average increase in positive views of 8.8% and decrease in negative of 5.3%). Qualitative results showed multiple positive self-perceived impacts on parents' lives. Participants' experiences with ENVISAGE were consistently positive; all believed they benefited from the program. CONCLUSIONS The results support our assumption that participation in ENVISAGE positively affects multiple areas of life, particularly parents' views of themself.
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Affiliation(s)
- Monika Novak-Pavlic
- School of Rehabilitation Science, McMaster University, Hamilton, Canada
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | | | | | - Ana-Maria Ilicic
- School of Rehabilitation Science, McMaster University, Hamilton, Canada
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Dina Dežmar
- Institute for Cooperation, Zagreb, Croatia
- Special Hospital for Orthopaedics and Rehabilitation Martin Horvat, Rovinj, Croatia
| | | | - Briano Di Rezze
- School of Rehabilitation Science, McMaster University, Hamilton, Canada
- CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Canada
| | - Luciana Macedo
- School of Rehabilitation Science, McMaster University, Hamilton, Canada
| | - Peter Rosenbaum
- School of Rehabilitation Science, McMaster University, Hamilton, Canada
- Department of Pediatrics, Faculty of Health Sciences, McMaster University, Hamilton, Canada
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Sheidanik S, Savabi-Esfahani M, Ghamarani A, Erfani A. Predictors of Fertility Intention in Parents with Educable Intellectually Disabled Children in Isfahan, Iran. IRANIAN JOURNAL OF NURSING AND MIDWIFERY RESEARCH 2025; 30:216-220. [PMID: 40275915 PMCID: PMC12017656 DOI: 10.4103/ijnmr.ijnmr_267_23] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 09/05/2023] [Revised: 11/11/2024] [Accepted: 11/24/2024] [Indexed: 04/26/2025]
Abstract
Background The fertility rate has declined in many countries over the past decades. Fertility intention is the determinant of fertility behavior. Various factors may affect the fertility intention of couples with no or healthy children. However, some parents may also have children with intellectual disabilities that affect their childbearing. Therefore, the main objective of this study is to identify predictors of fertility intention in parents with educable intellectually disabled children. Materials and Methods The present study was a descriptive cross-sectional study conducted on 193 parents with educable intellectually disabled children living in Isfahan. Sampling was implemented using clustering and the classification method from February to July 2019. Data were collected through a self-report questionnaire and analyzed using SPSS 20, logistic regression, and independent t-tests. Results Approximately 83.9% of participants had negative fertility intentions. Predictors of fertility intention were perceived behavior control (95%CI: 1.14- 1.42; p = 0.001; OR = 1.28), attitude (95%CI: 1.06- 1.24; p = 0.001; OR = 1.14) and subjective norm (95%CI: 1.08- 1.33; p = 0.001; OR = 1.20), respectively. On the other hand, the perceived behavioral control was the strongest predictor. The son preference was higher in parents with positive fertility intentions (p < 0.05). Conclusions According to the results of the present study, it seemed that factors such as perceived behavior control, attitude, and subjective norms affected fertility intention in parents with intellectually disabled children. Therefore, it is suggested to gain knowledge about the roles of these predictors and counsel parents to choose contraceptive methods or encourage them in childbearing.
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Affiliation(s)
- Sepideh Sheidanik
- Student Research Committee, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Mitra Savabi-Esfahani
- Department of Midwifery and Reproductive Health, Nursing and Midwifery Care Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Amir Ghamarani
- Department of Psychology and Education of Children with Special Needs, University of Isfahan, Isfahan, Iran
| | - Amir Erfani
- Department of Sociology and Anthropology, Nipissing University, Ontario, Canada
- Department of Social Sciences, Bu-Ali Sina University, Hamedan, Iran
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Piekema L, ten Brug A, Waninge A, van der Putten A. Attitudes of support people: a key element when implementing technologies for people with intellectual and visual disabilities. Disabil Rehabil Assist Technol 2025; 20:432-443. [PMID: 39113576 PMCID: PMC11789705 DOI: 10.1080/17483107.2024.2387774] [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: 01/17/2024] [Revised: 05/27/2024] [Accepted: 07/20/2024] [Indexed: 01/28/2025]
Abstract
AIM The degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regarding the use of such technologies for people with intellectual and visual disabilities. The aim of this study was to gain insight into how these constructs are connected and to explore their relationship with support person's characteristics and the support need levels of people with intellectual and visual disabilities. METHODS In total, 186 support people from a Dutch healthcare organisation focusing on people with intellectual and visual disabilities participated in an online questionnaire. We used a regression analysis to explore how the constructs, the characteristics, and the level of support needs were related. RESULTS Both effort expectancy (β = .35; t(185) = 5.04; p < .001) and attitude (β = .75; t(185) = 15.55; p < .001) of support people were related to the intention to use technologies. The effect of effort expectancy (β = .04; t(177) = .74; p = .462) on the intention to use technologies was mediated through attitude (β = .74; t(177) = 13.28; p < .001). Younger support people scored higher on attitude than older support people. CONCLUSIONS Support people's effort expectancy and attitude play a significant role in their intention to use technologies when supporting people with intellectual and visual disabilities, with attitude emerging as pivotal factor.
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Affiliation(s)
- Lotte Piekema
- Unit of Inclusive and Special Needs Education, University of Groningen, Groningen, the Netherlands
| | - Annet ten Brug
- Unit of Inclusive and Special Needs Education, University of Groningen, Groningen, the Netherlands
| | - Aly Waninge
- Research Group Healthy Ageing, Hanze University of Applied Sciences Groningen, Groningen, the Netherlands
- University Medical Center Groningen, Health Psychology Research, University of Groningen, Groningen, the Netherlands
| | - Annette van der Putten
- Unit of Inclusive and Special Needs Education, University of Groningen, Groningen, the Netherlands
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Dimitrova E, Kouroupa A, Totsika V. Resilience in Families of Autistic Children and Children With Intellectual Disability During the COVID-19 Pandemic. AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2025; 130:24-40. [PMID: 39709990 DOI: 10.1352/1944-7558-130.1.24] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/30/2023] [Accepted: 07/23/2024] [Indexed: 12/24/2024]
Abstract
Resilience in families of autistic children and children with intellectual disability is associated with factors such as family functioning, social support, and financial strain. Little is known about family resilience during the COVID-19 pandemic when many resources were limited. This study examined the association of family resilience with child characteristics, family resources, and socioecological factors during the pandemic. Data collected during the COVID-19 pandemic from 734 United Kingdom parents/caregivers of children who are autistic and/or have intellectual disability were analyzed using path analysis. Greater family resilience was significantly associated with fewer child behavior problems, absence of intellectual disability, higher financial status, and greater family functioning, though not school support. These factors might guide future research and practices to support vulnerable families at risk of low resilience.
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Affiliation(s)
- Elizaveta Dimitrova
- Elizaveta Dimitrova and Athanasia Kouroupa, University College London, UK; and Vasiliki Totsika, University College London, UK, Centre for Research in Intellectual and Developmental Disabilities, University of Warwick, UK, Tavistock & Portman NHS Foundation Trust, UK, and Millennium Institute for Care Research (MICARE), Chile
| | - Athanasia Kouroupa
- Elizaveta Dimitrova and Athanasia Kouroupa, University College London, UK; and Vasiliki Totsika, University College London, UK, Centre for Research in Intellectual and Developmental Disabilities, University of Warwick, UK, Tavistock & Portman NHS Foundation Trust, UK, and Millennium Institute for Care Research (MICARE), Chile
| | - Vasiliki Totsika
- Elizaveta Dimitrova and Athanasia Kouroupa, University College London, UK; and Vasiliki Totsika, University College London, UK, Centre for Research in Intellectual and Developmental Disabilities, University of Warwick, UK, Tavistock & Portman NHS Foundation Trust, UK, and Millennium Institute for Care Research (MICARE), Chile
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Barratt M, Lewis P, Duckworth N, Jojo N, Malecka V, Tomsone S, Rituma D, Wilson NJ. Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2025; 38:e70005. [PMID: 39763193 PMCID: PMC11724350 DOI: 10.1111/jar.70005] [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: 12/03/2023] [Revised: 11/11/2024] [Accepted: 12/15/2024] [Indexed: 01/11/2025]
Abstract
BACKGROUND Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children. METHOD A qualitative systematic review following Joanna Briggs Institute meta-aggregation approach has been completed and reported according to PRISMA guidelines. FINDINGS Seventeen qualitative studies were included. Three synthesised findings were identified: 'Challenges and rewards of being a parent carer', 'The real cost of caregiver burden' and 'Surrendering self for duty - the mothers role'. CONCLUSION Parents of children with moderate to profound intellectual disabilities reported diminished quality of life for themselves and their families, experiencing increased physical and mental health issues associated with caregiving burdens. Future research is needed that determine what effective support systems and interventions are needed to alleviate parental caregiver burden.
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Affiliation(s)
- Macey Barratt
- School of Nursing, Midwifery and Public HealthUniversity of CanberraCanberraAustralian Capital TerritoryAustralia
| | - Peter Lewis
- School of Nursing and MidwiferyWestern Sydney University, Hawkesbury CampusSydneyNew South WalesAustralia
| | - Natalie Duckworth
- School of Nursing and MidwiferyWestern Sydney University, Hawkesbury CampusSydneyNew South WalesAustralia
| | - Natasha Jojo
- School of Nursing, Midwifery and Public HealthUniversity of CanberraCanberraAustralian Capital TerritoryAustralia
| | - Viktorija Malecka
- Faculty of Health and Sports SciencesRiga Stradiņš UniversityRigaLatvia
| | - Signe Tomsone
- Faculty of Health and Sports SciencesRiga Stradiņš UniversityRigaLatvia
| | - Dita Rituma
- Faculty of Health and Sports SciencesRiga Stradiņš UniversityRigaLatvia
| | - Nathan J. Wilson
- School of Nursing and MidwiferyWestern Sydney University, Hawkesbury CampusSydneyNew South WalesAustralia
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Lu JH, Wei H, Zhang Y, Fei F, Huang HY, Dong QJ, Chen J, Ao DQ, Chen L, Li TY, Li Y, Dai Y. Effects of remote support courses on parental mental health and child development in autism: A randomized controlled trial. World J Psychiatry 2024; 14:1892-1904. [PMID: 39704371 PMCID: PMC11622010 DOI: 10.5498/wjp.v14.i12.1892] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/28/2024] [Revised: 09/22/2024] [Accepted: 10/11/2024] [Indexed: 11/27/2024] Open
Abstract
BACKGROUND Sustaining the mental health of autistic children's parents can be demanding. AIM To determine the effect of remote support courses on the mental health of parents and the development of autistic children. METHODS Parents of 140 autistic children were randomly assigned to two groups receiving a 2-week intervention: The control group received caregiver-mediated intervention (CMI); the experimental group received CMI with remote family psychological support courses (R-FPSC). The Parenting Stress Index-Short Form, Parenting Sense of Competence Scale, Generalized Anxiety Disorder-7, and Patient Health Questionnaire-9 were used to measure parents' mental health. The Childhood Autism Rating Scale and Gesell Developmental Schedules were used to evaluate children's development. RESULTS Improved parenting stress, sense of competence, depression, and anxiety were found in both groups, but improvements in parenting stress (81.10 ± 19.76 vs 92.10 ± 19.26, P < 0.01) and sense of competence (68.83 ± 11.23 vs 63.91 ± 10.86, P < 0.01) were greater in the experimental group, although the experimental group showed no significant reduction in depression or anxiety. Children's development did not differ significantly between the groups at follow-up; however, experimental group parents exhibited a short-term increase in training enthusiasm (12.78 ± 3.16 vs 11.57 ± 3.15, P < 0.05). CONCLUSION Integrating R-FPSC with CMI may be effective in reducing parenting stress, enhancing parents' sense of competence, and increasing parents' training enthusiasm.
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Affiliation(s)
- Jia-Hui Lu
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Hua Wei
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Yu Zhang
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Fan Fei
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Hai-Yan Huang
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Qiu-Jun Dong
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Jing Chen
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Dong-Qin Ao
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Li Chen
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Ting-Yu Li
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Yan Li
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Ying Dai
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
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12
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Yip A, Mo YH, Yip J, Tsui Z, Fong FF, Chu PM. Navigating a New Normal: A Qualitative Look at Long-Term Care Planning for Children with Intellectual Disabilities Post-COVID-19. Healthcare (Basel) 2024; 12:2512. [PMID: 39765939 PMCID: PMC11728057 DOI: 10.3390/healthcare12242512] [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: 10/30/2024] [Revised: 11/22/2024] [Accepted: 12/09/2024] [Indexed: 01/15/2025] Open
Abstract
Background: Family caregivers of individuals with intellectual disabilities (ID) face numerous challenges in long-term planning, which have been exacerbated amidst the COVID-19 pandemic. Specific triggers raise awareness of future planning needs, but barriers like painful emotions and exhaustion often impede the process. This study aimed to explore Hong Kong (HK) caregivers' perspectives on long-term planning for family members with ID at the later period of the pandemic. Methods: A qualitative phenomenological approach was utilized. In-depth interviews regarding experiences with long-term care preparation during COVID-19 were conducted with 12 purposively sampled HK caregivers of adults with ID. Data were analyzed using Colaizzi's method. Results: Four key themes emerged: planning a loved one's future alone, the burden of arranging care for disabled loved ones, planning a child's future care amid family tensions, and the pandemic worsening future caregiving worries. Conclusion: Caregivers urgently require encouragement and support from policymakers and professionals to build confidence in long-term strategy and access robust assistance. Implications include identifying caregiver concerns, aiding gradual planning implementation, increasing respite options, and facilitating discussions regarding future residential care homes. This study provides initial valuable insights into an overlooked population during an unprecedented crisis.
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Affiliation(s)
- Alice Yip
- S.K. Yee School of Health Sciences, Saint Francis University, 2 Chui Ling Lane, Tseung Kwan O, New Territories, Hong Kong, China;
| | - Yuen-Han Mo
- Department of Social Work, Hong Kong Shue Yan University, 10 Wai Tsui Crescent, Braemar Hill, North Point, Hong Kong, China; (Y.-H.M.); (F.-F.F.)
| | - Jeff Yip
- Hong Kong Institute of Paramedicine, Hong Kong, China;
| | - Zoe Tsui
- S.K. Yee School of Health Sciences, Saint Francis University, 2 Chui Ling Lane, Tseung Kwan O, New Territories, Hong Kong, China;
| | - Fu-Fai Fong
- Department of Social Work, Hong Kong Shue Yan University, 10 Wai Tsui Crescent, Braemar Hill, North Point, Hong Kong, China; (Y.-H.M.); (F.-F.F.)
| | - Pui-Man Chu
- Hong Chi Winifred Mary Cheung Morninghope School, 220 Lai King Hill Road, Kwai Chung, Hong Kong, China;
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13
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Jia M, Hu F, Yang D. Effects of different exercise modalities on pediatric and adolescent populations with developmental disorders: a network meta-analysis of randomized controlled trials. Eur J Pediatr 2024; 184:18. [PMID: 39546034 DOI: 10.1007/s00431-024-05858-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/30/2024] [Revised: 10/10/2024] [Accepted: 10/14/2024] [Indexed: 11/17/2024]
Abstract
To investigate the impact of different types of exercise modalities on children and adolescents with developmental disorders. Data were obtained from randomized controlled trials retrieved from five databases. Following the PRISMA NMA guidelines, a Bayesian framework-based Markov chain Monte Carlo simulation was used for aggregation and analysis. The included studies were assessed for risk of bias and quality evaluation. A total of 68 studies were included. Moderate-quality evidence suggests that combative sports may be the best exercise for enhancing gross motor skills, ball sports are the most effective for improving executive function, neurodevelopmental motor training is the most effective for improving social skills, and aquatic exercise is the most effective for improving behavioral problems. CONCLUSIONS Combat sports, ball sports, neurodevelopmental motor training, and aquatic exercise may be effective exercise modalities for improving symptoms in children and adolescents with developmental disorders. However, the degree of improvement can vary among individuals with specific developmental disorders. Therefore, precise assessment of the individual symptoms of children or adolescents is crucial before selecting specific exercise interventions. TRIAL REGISTRATION PROSPERO (CRD42024545673). WHAT IS KNOWN • Many studies indicate that exercise as an intervention can have positive effects on individuals with developmental disorders, such as ADHD and autism. However, reported effects vary, and there is no clear consensus on the optimal exercise intervention method yet. WHAT IS NEW • Through a comprehensive network meta-analysis, various exercise interventions for children and adolescents with developmental disorders were compared to determine the optimal approach. The study found that combat sports, ball sports, neurodevelopmental motor training, and aquatic exercise could potentially be effective modalities for improving symptoms in this population.
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Affiliation(s)
- Mingyuan Jia
- Department of Physical Education, Dong-A University, 37 Nakdong-Daero 550Beon-Gil, Saha-Gu, Busan, Republic of Korea
| | - Fengting Hu
- Department of Physical Education, Dong-A University, 37 Nakdong-Daero 550Beon-Gil, Saha-Gu, Busan, Republic of Korea.
| | - Duo Yang
- Department of Physical Education, Basic Teaching Center, Ocean University of China, Qingdao, China
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14
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Reyes-Martín J, Simó-Pinatella D, Andrés A. Emotional Reactions of Professionals to Challenging Behaviors in People with Intellectual and Developmental Disability. Behav Sci (Basel) 2024; 14:707. [PMID: 39199103 PMCID: PMC11351142 DOI: 10.3390/bs14080707] [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: 06/17/2024] [Revised: 08/09/2024] [Accepted: 08/10/2024] [Indexed: 09/01/2024] Open
Abstract
Professionals working with people with intellectual and developmental disability (IDD) can be exposed to challenging behaviors (CBs), which may result in professionals exhibiting emotional reactions that can impact their practices. This study examined these reactions and analyzed how they are influenced by the individual characteristics of people with IDD (gender, age, and level of IDD) and the variables related to CB (type of behavior and its frequency and behavioral function). A total of 125 professionals assessed 293 people with IDD who exhibited CBs. The professionals were asked to complete the Behavior Problems Inventory-Short Form, the Emotional Reactions to Challenging Behavior Scale, and the Questions About Behavior Function measure. It was revealed that positive emotional reactions predominated over negative ones. Significant results were found regarding the level of disability and the age of people with IDD. Emotional reactions were related to the severity of CBs, especially self-injurious and aggressive/destructive behavior, as well as certain behavioral functions. The severity of CBs and the age of people with IDD emerge as key predictors of the emotional reactions of professionals. In short, these reactions vary according to different variables, highlighting the importance of interventions that address professionals' emotional needs.
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Affiliation(s)
- Juliana Reyes-Martín
- Facultat de Psicologia, Ciències de l’Educació i de l’Esport, Blanquerna, Ramon Llull University, 08022 Barcelona, Spain; (D.S.-P.); (A.A.)
- Fundació Vallparadís, Mutua Terrassa, 08221 Barcelona, Spain
| | - David Simó-Pinatella
- Facultat de Psicologia, Ciències de l’Educació i de l’Esport, Blanquerna, Ramon Llull University, 08022 Barcelona, Spain; (D.S.-P.); (A.A.)
| | - Ana Andrés
- Facultat de Psicologia, Ciències de l’Educació i de l’Esport, Blanquerna, Ramon Llull University, 08022 Barcelona, Spain; (D.S.-P.); (A.A.)
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15
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Lusky-Weisrose E, Klebanov B, Friedman-Hauser G, Avitan I, Katz C. Online sexual abuse of children with disabilities: Analyzing reports of social workers' case files in Israel. CHILD ABUSE & NEGLECT 2024; 154:106869. [PMID: 38850752 DOI: 10.1016/j.chiabu.2024.106869] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/27/2023] [Revised: 02/22/2024] [Accepted: 05/22/2024] [Indexed: 06/10/2024]
Abstract
BACKGROUND Online child sexual abuse (OCSA) is a growing social concern. However, its manifestations among children with disabilities (CWDs), who face an increased risk of sexual abuse, remain largely unexamined. OBJECTIVE This study aims to fill this gap by examining professionals' perspectives of the OCSA of CWDs through their work at the 105 Hotline, an Israeli national call center that accepts queries and reports of the cyber victimization of minors. METHODS A mixed methods research design was employed. A quantitative analysis was performed on 114 case files involving the OCSA of CWDs, followed by a thematic content analysis of 23 follow-up files by social workers. RESULTS The quantitative findings revealed various characteristics of the survivors, their families, and OCSA. The qualitative analysis revealed that professionals indicate multiple interrelated risk factors for the OCSA of CWDs on three levels: child, related to the child's characteristics and disability traits; family, referring to familial complexities, parenting challenges, and socio-economic position; and relational, referring to the online abusive relationships between the perpetrator and the survivor. Furthermore, the online platform comprised characteristics that enhanced the risk of OCSA of CWDs. CONCLUSIONS The understanding that the OCSA of CWDs as a compounded risk that encompasses personal and environmental risk dimensions is necessary and should guide all professionals' decisions and actions. There is also an urgent need for governmental and community efforts to develop measures, policies, and support systems to reduce OCSA risks for CWDs. Moreover, knowledge and interventions should be developed for professionals and parents of CWDs to improve the identification and response to this overlooked phenomenon.
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Affiliation(s)
- Efrat Lusky-Weisrose
- Bob Shapell School of Social Work, Tel Aviv University, Tel Aviv, Israel; Paul Baerwald School of Social Work and Social Welfare, Hebrew University of Jerusalem, Israel.
| | - Bella Klebanov
- Bob Shapell School of Social Work, Tel Aviv University, Tel Aviv, Israel
| | | | - Ilan Avitan
- Bob Shapell School of Social Work, Tel Aviv University, Tel Aviv, Israel
| | - Carmit Katz
- Bob Shapell School of Social Work, Tel Aviv University, Tel Aviv, Israel
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16
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Leonard R, Hughes N, Forbes T, Brown M, Marsh L, Truesdale M, Todd S, Linden M. Effectiveness of Online Programmes for Family Carers of People with Intellectual Disabilities: Systematic Review of the International Evidence Base. Healthcare (Basel) 2024; 12:1349. [PMID: 38998883 PMCID: PMC11241307 DOI: 10.3390/healthcare12131349] [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: 05/20/2024] [Revised: 06/17/2024] [Accepted: 07/03/2024] [Indexed: 07/14/2024] Open
Abstract
This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.
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Affiliation(s)
- Rachel Leonard
- School of Nursing and Midwifery, Queen's University Belfast, Belfast BT7 1NN, UK
| | - Nathan Hughes
- Department of Sociological Studies, University of Sheffield, Sheffield S10 2TN, UK
| | - Trisha Forbes
- School of Nursing and Midwifery, Queen's University Belfast, Belfast BT7 1NN, UK
| | - Michael Brown
- School of Nursing and Midwifery, Queen's University Belfast, Belfast BT7 1NN, UK
| | - Lynne Marsh
- School of Nursing and Midwifery, Queen's University Belfast, Belfast BT7 1NN, UK
| | - Maria Truesdale
- College of Medical Veterinary and Life Sciences, University of Glasgow, Glasgow G12 8QQ, UK
| | - Stuart Todd
- School of Care Sciences, University of South Wales, Usk Way, Newport NP20 2BP, UK
| | - Mark Linden
- School of Nursing and Midwifery, Queen's University Belfast, Belfast BT7 1NN, UK
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Karni-Vizer N, Brusilovskiy E, Salzer M. Experiences of verbal violence among people with intellectual disabilities in Israel. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2024; 37:e13248. [PMID: 38785135 DOI: 10.1111/jar.13248] [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: 06/16/2023] [Revised: 04/26/2024] [Accepted: 05/03/2024] [Indexed: 05/25/2024]
Abstract
BACKGROUND This study examines the extent of exposure to verbal violence experienced by people with intellectual disabilities and whether it differs based on their housing situation: living in the community, with family, or in a residential facility. METHOD One hundred and eighty-nine people with intellectual disabilities were interviewed about their experience with verbal violence. RESULTS Eighty-six percent reported experiencing verbal violence in their lifetime and approximately 77% experienced it the past week. Participants were most likely to be yelled at, and friends were the most common perpetrators. While there were few differences by setting, people living with their families were more likely to be laughed at and marginally more likely to experience rude comments. CONCLUSIONS Verbal violence is prevalent in the lives of people with intellectual disabilities in Israel. Interventions are necessary to assist people with intellectual disabilities to deal with such incidents, with possible additional supports needed for those living with family.
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Affiliation(s)
| | - Eugene Brusilovskiy
- Department of Social & Behavioral Sciences, Temple University, Philadelphia, Pennsylvania, USA
| | - Mark Salzer
- Social and Behavioral Sciences, College of Public Health, Temple University, Philadelphia, Pennsylvania, USA
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18
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Aldosari MS, Alzhrani AJ. Evaluating Saudi Parental Interagency on Collaborative Initiatives for Successful Post-Secondary Transition of Students with Intellectual Disabilities. JOURNAL OF INTELLECTUAL DISABILITIES : JOID 2024:17446295241262565. [PMID: 38881272 DOI: 10.1177/17446295241262565] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/18/2024]
Abstract
Effective collaboration between schools and community agencies is paramount for the successful transition of students with disabilities to post-secondary educational settings. This study, conducted in Riyadh, Saudi Arabia, focuses on assessing the level of collaboration from the perspective of parents of students with intellectual disabilities. Using descriptive analysis, data was gathered from 191 parents, and the results indicate a perceived low level of collaboration between schools and various agencies in planning and supporting the transition to post-secondary environments. The study results evaluate collaboration in three dimensions: (a) universities rank lowest with x ¯ =1.61 and SD=1.102). (b) vocational training centers ranking highest (1st rank) with an x ¯ = 1.97 and SD = 1.079), and (c) other relevant service centers 2nd rank with x ¯ =1.69 and SD= 1.177. The findings emphasize the necessity for legislative measures directing agencies to engage in collaborative agreements with secondary schools. This proactive approach aims to enhance opportunities for students with intellectual disabilities during their transition to post-secondary education and training. The study concludes with implications for future research and recommendations for fostering improved collaboration and support mechanisms.
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Affiliation(s)
- Mubarak S Aldosari
- Department of Special Education, Prince Sattam Bin Abdulaziz University, Saudi Arabia
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19
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Täljedal T, Granlund M, Osman F, Norén Selinus E, Fängström K. Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support. Front Psychol 2024; 15:1389995. [PMID: 38882520 PMCID: PMC11177875 DOI: 10.3389/fpsyg.2024.1389995] [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: 02/22/2024] [Accepted: 05/15/2024] [Indexed: 06/18/2024] Open
Abstract
Objective To investigate patterns of parenting stress and access to sufficient informal and formal support among parents of children with disabilities. To explore whether child cognitive level, conduct problems and the need of language interpretation in contacts between parents and professionals are associated with patterns of parenting stress and support. Method Parents (N = 140) of children with disabilities in Sweden completed a questionnaire about parenting stress and support. Patterns of three variables-parenting stress and access to sufficient informal and formal support-were investigated using cluster analysis. The relationship of child cognitive level, level of conduct problems and of language interpretation needs between parents and professionals to cluster membership was explored using multinomial logistic regression. Results Five different clusters of parenting stress and support emerged. Parents in cluster 1 had lower than sample mean ratings on all three variables. Cluster 2 had elevated parenting stress, cluster 3 had elevated insufficient informal support and cluster 4 had elevated insufficient formal support. Cluster 5 had elevated ratings on all three variables. Greater child cognitive difficulties increased the likelihood of parent membership in cluster 2 (elevated stress), cluster 3 (elevated insufficient informal support), or cluster 5 (elevated ratings on all variables). Child conduct problems increased the likelihood of membership in cluster 2 (elevated stress) or cluster 5 (elevated ratings on all variables). No relationship between language interpretation needs and cluster membership was found. Conclusions Patterns of parenting stress and sufficiency of support, and their associations with child characteristics, vary substantially. However, families of children with conduct problems experiencing elevated parenting stress in combination with insufficient informal and formal support, may be particularly vulnerable. The results of the current study highlight the clinical importance of exploring and identifying individual parenting stressors and perceived levels of support, to be able to adapt services to better suit a variety of needs, and thus promote equitable care.
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Affiliation(s)
- Torun Täljedal
- Region Västmanland-Uppsala University, Centre for Clinical Research, Västmanland Hospital Västerås, Västerås, Sweden
- CHAP, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
| | - Mats Granlund
- CHILD Research Environment, Jönköping University, Jönköping, Sweden
- Department of Mental Health, Norway Technical and Natural Sciences University, Trondheim, Norway
| | - Fatumo Osman
- School of Health and Welfare, Dalarna University, Falun, Sweden
| | - Eva Norén Selinus
- Region Västmanland-Uppsala University, Centre for Clinical Research, Västmanland Hospital Västerås, Västerås, Sweden
- The Swedish School of Sport and Health Sciences, Stockholm, Sweden
| | - Karin Fängström
- CHAP, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
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20
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Međaković J, Čivljak A, Zorčec T, Vučić V, Ristić-Medić D, Veselinović A, Čivljak M, Puljak L. Perceptions on support, challenges and needs among parents and caregivers of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study. BMC Pediatr 2024; 24:297. [PMID: 38702636 PMCID: PMC11067112 DOI: 10.1186/s12887-024-04770-7] [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: 07/05/2023] [Accepted: 04/16/2024] [Indexed: 05/06/2024] Open
Abstract
BACKGROUND Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.
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Affiliation(s)
- Jelena Međaković
- Centre for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, Zagreb, 10000, Croatia
| | - Antonia Čivljak
- Institute of Emergency Medicine of Zagreb County, Velika Gorica, Zagreb, Croatia
| | - Tatjana Zorčec
- University Children's Hospital Medical Faculty, Skopje, North, Macedonia
| | - Vesna Vučić
- Centre of Research Excellence in Nutrition and Metabolism, Group for Nutritional Biochemistry and Dietology, Institute for Medical Research, National Institute of the Republic of Serbia, University of Belgrade, Belgrade, Serbia
| | - Danijela Ristić-Medić
- Centre of Research Excellence in Nutrition and Metabolism, Group for Nutritional Biochemistry and Dietology, Institute for Medical Research, National institute of Republic of Serbia, University of Belgrade, Belgrade, Serbia
| | - Aleksandra Veselinović
- Cognitive Neuroscience Department, Research and Development Institute "Life Activities Advancement Centre", Belgrade, 11000, Serbia
| | - Marta Čivljak
- Centre for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, Zagreb, 10000, Croatia
| | - Livia Puljak
- Centre for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, Zagreb, 10000, Croatia.
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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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22
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Hagenaar DA, Bindels-de Heus KGCB, Lubbers K, Ten Hoopen LW, Rietman AB, de Nijs PFA, Hillegers MHJ, Moll HA, de Wit MCY, Dieleman GC, Mous SE. Child characteristics associated with child quality of life and parenting stress in Angelman syndrome. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH : JIDR 2024; 68:248-263. [PMID: 38009976 DOI: 10.1111/jir.13106] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/24/2022] [Revised: 10/23/2023] [Accepted: 10/24/2023] [Indexed: 11/29/2023]
Abstract
BACKGROUND Angelman syndrome (AS) is a rare neurodevelopmental disorder characterised by severe intellectual disability, movement disorder, epilepsy, sleeping problems, and behavioural issues. Little is known on child health-related quality of life (HRQoL) in AS. AS family studies have reported elevated parenting stress and a high impact of the child's syndrome on the parent. It is unclear which factors influence child HRQoL and parenting stress/impact in AS. METHODS We collected data prospectively through standardised clinical assessments of children with AS at the ENCORE Expertise centre for Angelman Syndrome at the Erasmus MC Sophia Children's Hospital. A linear regression analysis was conducted for the following outcome variables: (1) child HRQoL (Infant and Toddler Quality of Life Questionnaire); (2) the impact of the child's syndrome on the parent (Infant and Toddler Quality of Life Questionnaire); and (3) parenting stress (Parenting Stress Index). Predictor variables were child genotype, epilepsy, sleeping problems (Sleep Disturbance Scale for Children), cognitive developmental level (Bayley Cognition Scale), autistic features (Autism Diagnostic Observation Schedule) and emotional/behavioural problems (Child Behaviour Checklist). Covariates were sex, age and socio-economic status. RESULTS The study sample consisted of 73 children with AS, mean age = 9.1 years, range = 2-18 years. Emotional/behavioural problems were the strongest significant predictor of lowered child HRQoL. Internalising problems were driving this effect. In addition, having the deletion genotype and higher age was related to lower child HRQoL. Sleeping problems were related to a higher impact of the child's syndrome on the parent. Finally, emotional/behavioural problems were associated with higher parenting stress. Cognitive developmental level, autistic features and epilepsy were not a significant predictor of child HRQoL and parenting stress/impact. CONCLUSIONS These results suggest that interventions aimed at increasing child HRQoL and decreasing parenting stress/impact in AS should focus on child emotional/behavioural problems and sleeping problems, using a family-centred approach.
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Affiliation(s)
- D A Hagenaar
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
- Department of Paediatrics, Erasmus MC, Rotterdam, The Netherlands
| | - K G C B Bindels-de Heus
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Paediatrics, Erasmus MC, Rotterdam, The Netherlands
| | - K Lubbers
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
| | - L W Ten Hoopen
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
| | - A B Rietman
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
| | - P F A de Nijs
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
| | - M H J Hillegers
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
| | - H A Moll
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Paediatrics, Erasmus MC, Rotterdam, The Netherlands
| | - M C Y de Wit
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Neurology and Paediatric Neurology, Erasmus MC, Rotterdam, the Netherlands
| | - G C Dieleman
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
| | - S E Mous
- ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, The Netherlands
- Department of Child- and Adolescent Psychiatry/Psychology, Erasmus MC, Rotterdam, The Netherlands
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Scheibner M, Scheibner C, Hornemann F, Arélin M, Hennig YD, Kiep H, Wurst U, Merkenschlager A, Gburek-Augustat J. The Impact of Demographic Characteristics on Parenting Stress among Parents of Children with Disabilities: A Cross-Sectional Study. CHILDREN (BASEL, SWITZERLAND) 2024; 11:239. [PMID: 38397351 PMCID: PMC10887938 DOI: 10.3390/children11020239] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 01/10/2024] [Revised: 02/07/2024] [Accepted: 02/10/2024] [Indexed: 02/25/2024]
Abstract
Even though it is already known that parents of children with developmental delays or disabilities experience higher parenting stress than families of typically developing children, the contributing factors need to be analyzed in more detail. The aim of this cross-sectional study was to examine the influence of demographic characteristics on parenting stress from caring for a disabled child and to identify possible protective or additional stressful social factors. A total of 611 mothers and fathers of children with developmental delays, chronic diseases, or disabilities completed two questionnaires during their medical appointments at the Children's Development Center (CDC) of Leipzig University Hospital between June 2020 and February 2021. These consisted of the German versions of the Parenting Stress Index (PSI) and the Impact on Family Scale (IOFS). To determine differences between the various groups, we used parametric and non-parametric tests. Mothers and single parents are significantly more strained than fathers and non-single parents. Parents with vocational training, those who graduated with a higher-level diploma, and those within employment report a higher financial burden. While unemployed and full-time workers experience the lowest stress, parents who work part-time or exclusively take care of their child show higher levels of stress. Looking at the age of the child, parents of children of young primary school age are the most stressed, and those of infants are the least stressed. These findings suggest that mothers and single parents especially should receive more support, and parents need to be provided with more attention during their child's entry into school. Possible limitations and the influence of the COVID-19 pandemic are discussed.
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Affiliation(s)
- Maxi Scheibner
- Division of Neuropediatrics, Hospital for Children and Adolescents, University Hospital Leipzig, 04103 Leipzig, Germany; (C.S.); (A.M.); (J.G.-A.)
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24
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Scheibner C, Scheibner M, Hornemann F, Arélin M, Hennig YD, Kiep H, Wurst U, Merkenschlager A, Gburek-Augustat J. Parenting stress in families of children with disabilities: Impact of type of disability and assessment of attending paediatricians. Child Care Health Dev 2024; 50:e13193. [PMID: 37908180 DOI: 10.1111/cch.13193] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/03/2022] [Revised: 07/23/2023] [Accepted: 10/11/2023] [Indexed: 11/02/2023]
Abstract
BACKGROUND Parents of children with developmental disorders (DD) or disabilities report greater parenting stress than parents of typically developing children. To minimise this stress, stressful factors need to be known and stress needs to be recognised early. The present cross-sectional study aims to systematically assess and compare parenting stress in families of children with various types of disabilities. In addition, the assessment of parenting stress by attending paediatricians will be evaluated. METHODS We surveyed 611 parents about their parenting stress at the Children's Development Center (CDC). Three questionnaires, including the German versions of the Parenting Stress Index (PSI) and Impact on Family Scale (IOFS), were used to evaluate parenting stress. Furthermore, attending paediatricians assessed of the child's type of disability and their perception of parenting stress in a separate questionnaire. RESULTS Fifty-five percent of all parents reported stress at a clinically relevant level, 65% in the child domain and 39% in the parent domain of the PSI. Parenting stress differed significantly across diagnostic categories (p < 0.01) and was associated with childhood disability related issues of behaviour, sleep or feeding issues. Parenting stress was often underestimated by the paediatricians, especially when the children had disabilities perceived as less severe. In one-third of parents with clinically relevant total stress, paediatricians reported low stress levels. Parent-reported financial problems, social isolation, and partnership conflicts were not suspected by paediatricians in ≥85% of cases. CONCLUSIONS Clinically relevant parenting stress was found more often than in comparable studies. An assessment of parenting stress by paediatricians may be complicated by time constraints in medical appointments, the mainly child-centred consultation, or restricted expression of parents' stress. Paediatricians should move from a purely child-centred to a holistic, family-centred approach to treatment. Routine screening of parenting stress using standardised questionnaires could be helpful to identify affected families.
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Affiliation(s)
- Cora Scheibner
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
| | - Maxi Scheibner
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
| | - Frauke Hornemann
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
| | - Maria Arélin
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
| | - Yvonne Doris Hennig
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
| | - Henriette Kiep
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
| | - Ulrike Wurst
- Hospital for Children and Adolescents, University Hospital Leipzig, Leipzig, Germany
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25
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Pereira RCM, Apis A, Dos Santos TR, de Avó LRDS, Pilotto RF, Germano CMR, Melo DG. Quality of life of Brazilian families who have children with Williams syndrome. JOURNAL OF INTELLECTUAL DISABILITIES : JOID 2023; 27:794-807. [PMID: 35543661 DOI: 10.1177/17446295221079583] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/14/2023]
Abstract
This cross-sectional and descriptive study examined the family quality of life (FQoL) among 72 Brazilian families who have children with Williams syndrome, a rare genetic disorder in which most individuals have an intellectual disability, usually mild. Data were collected using sociodemographic and clinical data forms and the Beach Center FQoL Scale. The overall FQoL score was 3.90 ± 0.45, below the limit of four points considered satisfactory. Families felt more satisfied with the family interaction (4.11 ± 0.57), parenting (4.07 ± 0.42), and disability-related support (3.94 ± 0.62) domains, and less satisfied with the family's emotional (3.49 ± 0.73) and physical/material well-being (3.73 ± 0.74) domains. Paternal education, children's cardiopathy and autonomy in activities of daily living explained 24.5% of the variance in the overall FQoL. Measures are necessary to improve the emotional and physical/material well-being of families to reduce the family burden. Monitoring the child's cardiac condition and promoting independence in activities of daily living are also the main procedures.
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Affiliation(s)
| | - Aline Apis
- Departamento de Medicina, Universidade Federal de São Carlos (UFSCar), Brasil
| | | | - Lucimar Retto da Silva de Avó
- Departamento de Medicina, Universidade Federal de São Carlos (UFSCar), Brasil
- Instituto Nacional de Genética Médica Populacional, INAGEMP, Brasil
| | | | - Carla Maria Ramos Germano
- Departamento de Medicina, Universidade Federal de São Carlos (UFSCar), Brasil
- Instituto Nacional de Genética Médica Populacional, INAGEMP, Brasil
| | - Débora Gusmão Melo
- Departamento de Medicina, Universidade Federal de São Carlos (UFSCar), Brasil
- Instituto Nacional de Genética Médica Populacional, INAGEMP, Brasil
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de Kuijper G, Fokkema T, Jansen M, Hoekstra PJ, de Bildt A. Difficulties in Addressing Diagnostic, Treatment and Support Needs in Individuals with Intellectual Disability and Persistent Challenging Behaviours: A Descriptive File Study of Referrals to an Expertise Centre. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2023; 20:6365. [PMID: 37510597 PMCID: PMC10378833 DOI: 10.3390/ijerph20146365] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 04/18/2023] [Revised: 06/23/2023] [Accepted: 07/13/2023] [Indexed: 07/30/2023]
Abstract
Service providers may experience difficulties in providing appropriate care to optimize the functioning of individuals with intellectual disability and challenging behaviour. External consultation to identify and address the unmet support needs underlying the behaviour may be beneficial. Applying the multidimensional American Association Intellectual and Developmental Disabilities (AAIDD) model may facilitate this approach. We aimed to describe the content and outcomes of consultation for individuals with intellectual disability and challenging behaviour referred to the Dutch Centre for Consultation and Expertise in relation to the AAIDD model. Interventions were based on the clients' diagnostic, treatment, and support needs and were categorized according to the five dimensions of the AAIDD model. Outcomes of the consultations were assessed based on reports in the file and rated as 'clear improvement', 'improvement' or 'no improvement or deterioration'. In two-thirds of the 104 studied files, consultees were satisfied with the improvement in functioning. Interventions targeted the difficulties of the service providers in supporting their clients and were most often applied within the Health and Context dimensions of the AAIDD model. We may conclude that consultation of an expert team may be valuable to support the care providers, and the use of the AAIDD model may be helpful to address the unmet needs to improve the functioning of individuals with challenging behaviour.
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Affiliation(s)
- Gerda de Kuijper
- GGZ Drenthe/Department Centre for intellectual Disability and Mental Health, Middenweg 19, 9404 LL Assen, The Netherlands
- Department of Child and Adolescent Psychiatry, University of Groningen, University Medical Center Groningen, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
| | - Tryntsje Fokkema
- GGZ Drenthe/Department Centre for intellectual Disability and Mental Health, Middenweg 19, 9404 LL Assen, The Netherlands
| | - Martine Jansen
- Centre for Consultation and Expertise, Australielaan 14, 3526 AB Utrecht, The Netherlands
| | - Pieter J Hoekstra
- Department of Child and Adolescent Psychiatry, University of Groningen, University Medical Center Groningen, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
- Accare Child Study Center, Groningerstraat 352, 9402 LT Assen, The Netherlands
| | - Annelies de Bildt
- Department of Child and Adolescent Psychiatry, University of Groningen, University Medical Center Groningen, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
- Accare Child Study Center, Groningerstraat 352, 9402 LT Assen, The Netherlands
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Lo TLT, Wan AHY, Fong TCT, Wong PKS, Lo HHM, Chan CKP, Ho RTH. Protocol for a mixed-methods randomised controlled trial evaluating the effectiveness of a dyadic expressive arts-based intervention in improving the psychosocial well-being of children with intellectual disability in special schools and their mothers. BMJ Open 2023; 13:e067239. [PMID: 37419633 PMCID: PMC10335407 DOI: 10.1136/bmjopen-2022-067239] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/08/2022] [Accepted: 06/15/2023] [Indexed: 07/09/2023] Open
Abstract
INTRODUCTION Mothers of children with intellectual disability (ID) are often distressed because of intensive workloads and difficulties in communicating with their children. Given the interdependence between the psychosocial well-being of such dyads, interventions that promote parent-child relationships and mutual communication would be beneficial. Arts provide alternative avenues for expression and offer an imaginative and playful environment for discovering new communication strategies. Given the lack of studies on arts-based dyadic interventions, this study aims to examine the effectiveness of dyadic expressive arts-based intervention (EXAT) in improving the psychosocial outcomes of children with ID and their mothers and the mother-child relationships. METHODS AND ANALYSIS This study will adopt a mixed-methods randomised controlled trial design, wherein 154 dyads of children with ID and their mothers will be randomised into either the dyadic EXAT group or the treatment-as-usual waitlist control group. Quantitative data will be collected at four time points: baseline (T0), postintervention (T1), 3-month postintervention (T2) and 6-month postintervention (T3). Qualitative data will be collected from a subset of 30 mothers in the intervention group at T1 and T3 to document their experiences and perceived changes after the intervention. Mixed-effects models and path analysis will be adopted to analyse the quantitative data, whereas thematic analysis will be applied to the qualitative data. Both sets of data will be triangulated for an integrated view of the effectiveness and mechanism of the intervention. ETHICS AND DISSEMINATION Ethical approval has been obtained from the Human Research Ethics Committee of the University of Hong Kong (Ref. no.: EA200329). Written consent forms will be obtained from all recruited participants (mothers, children with ID and teachers/social workers) before data collection. The study findings will be disseminated in international conferences and peer-reviewed academic journals. TRIAL REGISTRATION NUMBER NCT05214859.
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Affiliation(s)
- Temmy Lee Ting Lo
- Centre on Behavioral Health, The University of Hong Kong, Hong Kong, China
| | - Adrian Ho Yin Wan
- Centre on Behavioral Health, The University of Hong Kong, Hong Kong, China
- Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong, China
| | - Ted Chun Tat Fong
- Centre on Behavioral Health, The University of Hong Kong, Hong Kong, China
| | | | - Herman Hay Ming Lo
- Department of Applied Social Sciences, The Hong Kong Polytechnic University, Hong Kong, China
| | | | - Rainbow Tin Hung Ho
- Centre on Behavioral Health, The University of Hong Kong, Hong Kong, China
- Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong, China
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Kerr J, Sharry J, Wilson C. Parents' experiences of raising adolescents with intellectual or developmental disabilities. JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY 2023; 48:206-214. [PMID: 39815910 DOI: 10.3109/13668250.2022.2057843] [Citation(s) in RCA: 4] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/18/2025]
Abstract
BACKGROUND Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence. METHOD Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis. RESULTS On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle. CONCLUSIONS Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.
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Affiliation(s)
- John Kerr
- School of Psychology, Trinity College Dublin, The University of Dublin, Dublin 2, Ireland
| | - John Sharry
- Parents Plus Charity, Mater Hospital, Dublin, Ireland
- School of Psychology, University College Dublin, Dublin 4, Ireland
| | - Charlotte Wilson
- School of Psychology, Trinity College Dublin, The University of Dublin, Dublin 2, Ireland
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Chaudhry N, Sattar R, Kiran T, Wan MW, Husain M, Hidayatullah S, Ali B, Shafique N, Suhag Z, Saeed Q, Maqbool S, Husain N. Supporting Depressed Mothers of Young Children with Intellectual Disability: Feasibility of an Integrated Parenting Intervention in a Low-Income Setting. CHILDREN (BASEL, SWITZERLAND) 2023; 10:913. [PMID: 37371145 DOI: 10.3390/children10060913] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/15/2023] [Revised: 05/15/2023] [Accepted: 05/15/2023] [Indexed: 06/29/2023]
Abstract
As a lifelong condition, intellectual disability (ID) remains a public health priority. Parents caring for children with ID experience serious challenges to their wellbeing, including depression, anxiety, stress and health-related quality of life. Integrated parenting interventions, which have been well evidenced for depressed mothers, may also effectively support depressed parents with a child with ID in low-resource settings such as Pakistan, and in turn optimise child outcomes. We conducted a mixed-method rater-blind feasibility randomised controlled trial, which assessed the feasibility and acceptability of the Learning Through Play in My Own Way Plus (LTP-IMOW Plus) intervention. Mothers who screened positive for depression (n = 26) with a young child (age 3-6 years) with ID were recruited from two low-resource community settings. Participants in the intervention arm (n = 13) received 12 group sessions of LTP-IMOW Plus and others (n = 13) received routine care. The intervention was feasible and acceptable with 100% retention and 100% session attendance. The intervention improved depression, anxiety, parenting stress and child socialisation score outcomes relative to the routine care arm. The framework utilised to analyse the qualitative interviews with seven participants at pre-intervention identified a range of struggles experienced by the mothers, and at post-intervention, found improved knowledge of child development and practices, improved mother-child relationships, recommendations for the intervention and perceived practical barriers and facilitators. The findings highlight the prospects for a clinical and cost-effective trial of an integrated parenting intervention to manage long-term parental mental health needs and improve child outcomes.
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Affiliation(s)
- Nasim Chaudhry
- Pakistan Institute of Living and Learning, Karachi 75600, Pakistan
| | - Rabia Sattar
- Pakistan Institute of Living and Learning, Karachi 75600, Pakistan
| | - Tayyeba Kiran
- Pakistan Institute of Living and Learning, Karachi 75600, Pakistan
| | - Ming Wai Wan
- Division of Psychology and Mental Health, University of Manchester, Manchester M13 9PL, UK
| | - Mina Husain
- Department of Psychiatry, University of Toronto, Toronto, ON M5S IR8, Canada
| | | | - Bushra Ali
- Pakistan Institute of Living and Learning, Karachi 75600, Pakistan
| | - Nadia Shafique
- Department of Psychology, Foundation University Islamabad, Rawalpindi 44000, Pakistan
| | - Zamir Suhag
- TVI-Trust for Vaccines and Immunization, Head Office, Suite No 301, Al-Sehat Centre, Rafiqui Shaheed Road, Karachi 74000, Pakistan
| | - Qamar Saeed
- School of Public Health, Dow University of Health Sciences DUHS, Karachi 74200, Pakistan
| | - Shazia Maqbool
- Department of Developmental-Behavioral Pediatrics, The Children's Hospital, (UC HS-CH), University of Child Health Sciences, Lahore 54600, Pakistan
| | - Nusrat Husain
- Division of Psychology and Mental Health, University of Manchester, Manchester M13 9PL, UK
- Mersey Care NHS Foundation Trust, Prescot L34 1PJ, UK
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Adaptation of Parents Raising a Child with ASD: The Role of Positive Perceptions, Coping, Self-efficacy, and Social Support. J Autism Dev Disord 2023; 53:1224-1242. [PMID: 35507296 DOI: 10.1007/s10803-022-05537-8] [Citation(s) in RCA: 12] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/16/2022] [Indexed: 10/18/2022]
Abstract
This study explored the adaptation of parents raising a child with an Autism Spectrum Disorder (ASD) specifically the contributory role of positive perceptions, coping, self-efficacy, and social support. One hundred and thirty-six parents of children with a diagnosis of ASD completed a battery of self-report questionnaires via an online survey. Using multiple regression analyses positive perceptions, adaptive coping, self-efficacy, and social support were each a significant contributor to one or more positive adaptation outcomes. Multiple moderated regression analysis found no evidence that these factors were significant moderators between behavioural problems and parental adaptation. The implications of these findings in supporting parents raising a child with ASD are outlined.
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31
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Boeije H, Leemrijse C, Zonneveld E, van Schelven F. 'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long-term care planning during the COVID-19 pandemic. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2022; 36:310-319. [PMID: 36509109 PMCID: PMC9877928 DOI: 10.1111/jar.13060] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/03/2022] [Revised: 09/29/2022] [Accepted: 11/30/2022] [Indexed: 12/14/2022]
Abstract
BACKGROUND Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands. METHOD Twenty-five semi-structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. RESULTS Family carers were recurrently concerned with long-term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID-19 pandemic reinforced awareness of long-term care planning and moved some to action. CONCLUSIONS The perceived urge to plan by family carers has grown due to the COVID-19 pandemic. The current study provides valuable insights for stakeholders to support them in this.
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Affiliation(s)
- Hennie Boeije
- NivelNetherlands Institute for Health Services ResearchUtrechtThe Netherlands
| | - Chantal Leemrijse
- NivelNetherlands Institute for Health Services ResearchUtrechtThe Netherlands
| | - Ellen Zonneveld
- NivelNetherlands Institute for Health Services ResearchUtrechtThe Netherlands
| | - Femke van Schelven
- NivelNetherlands Institute for Health Services ResearchUtrechtThe Netherlands
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Alnahdi GH, Alwadei A, Woltran F, Schwab S. Measuring Family Quality of Life: Scoping Review of the Available Scales and Future Directions. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 19:15473. [PMID: 36497550 PMCID: PMC9738839 DOI: 10.3390/ijerph192315473] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 10/28/2022] [Revised: 11/18/2022] [Accepted: 11/19/2022] [Indexed: 06/17/2023]
Abstract
The lack of quality of life is a key issue for families with children with an intellectual disability. While the quality of life for people with disabilities has previously been researched as an individual variable, this has now shifted to include family members. The purpose of this study was to conduct a review of the studies measuring the quality of life of families with an intellectually disabled member, in order to identify the most commonly used scales and their psychometric properties. METHOD Data were collected from six databases (ERIC, Web of Science, Scopus, CINAHL, MedLine, and Google Scholar), and this search yielded 3948 studies. One hundred and twenty studies that met the inclusion criteria were included in this study. RESULTS Nine scales were used in the last years to measure the quality of life for families with individuals with an intellectual disability. The Beach Center scale was the most common scale, followed by the Family Quality of Life Survey and the World Health Organization's quality of life assessment (WHOQoL-BREF). The results showed that the included studies in the review lack the consideration of a broader population representing the different types of cultures with different socioeconomic backgrounds. Key aspects used to assess the FQoL are environmental factors (proximal and distal factors), as well as economic factors. CONCLUSION Although the operationalization of the FQoL often incudes several subthemes, a general agreement regarding which domains of the FQoL need to be included in the measurements, and these do not exist right now. Moreover, multidimensional scales are still rare.
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Affiliation(s)
- Ghaleb H. Alnahdi
- Special Education Department, College of Education, Prince Sattam Bin Abdulaziz University, Al-Kharj 11942, Saudi Arabia
| | - Arwa Alwadei
- Special Education Department, College of Education, Prince Sattam Bin Abdulaziz University, Al-Kharj 11942, Saudi Arabia
| | - Flora Woltran
- Centre for Teacher Education, Department of Education, University of Vienna, 1010 Vienna, Austria
| | - Susanne Schwab
- Centre for Teacher Education, Department of Education, University of Vienna, 1010 Vienna, Austria
- Optentia Research Focus Area, North-West University Vanderbijlpark, 1174 Hendrick Van Eck Boulevard, Vanderbijlpark 1900, South Africa
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Kaçan H, Bayram Değer V, Sakız H. Outcomes of genital hygiene and anxiety training for mothers of girls with profound intellectual disabilities: A randomized controlled experiment. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2022; 70:651-664. [PMID: 38983497 PMCID: PMC11229722 DOI: 10.1080/20473869.2022.2129126] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 04/28/2022] [Accepted: 09/22/2022] [Indexed: 07/11/2024]
Abstract
Female children with profound intellectual disabilities (IDs) may experience symptoms of urinary tract infections (UTIs) and depend on others' care. However, their caregivers may lack general hygiene skills and experience heightened anxiety when their care is expected. This study reports outcome of a training that aims to enhance genital hygiene skills and decrease anxiety levels of mothers of girls diagnosed with profound ID. The study was conducted in a city located in Turkey in 2020. It was designed with a randomized controlled experimental approach based on a pre-test and post-test model with experimental and control groups. The sample consisted of 66 mothers of girls who were diagnosed with profound ID, did not have UTI but were at high risk of developing it. A 6-week program with 24 sessions was implemented. After the training, mothers in the experimental group changed the sanitary pad and the underwear during menstruation and gave their daughters a bath more frequently; had a higher knowledge of recognizing and preventing UTI symptoms and cleaning of the perineum area; and had significantly lower levels of anxiety. A carefully designed simulator-based training can enhance the knowledge and skills of mothers to recognize the UTI symptoms, apply their knowledge to prevent the symptoms and implement genital hygiene practices, which in turn have a positive effect on reducing their level of anxiety.
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Affiliation(s)
- Havva Kaçan
- Department of Nursing, Faculty of Health Sciences, Kastamonu University, Kastamonu, Turkey
| | - Vasfiye Bayram Değer
- Department of Nursing, Faculty of Health Sciences, Mardin Artuklu University, Mardin, Turkey
| | - Halis Sakız
- Department of Educational Sciences, Faculty of Letters, Mardin Artuklu University, Mardin, Turkey
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Ma BX, Kong YM, Zhang XY, Zhang YT, He Q. Analysis of misdiagnosis of children with autism spectrum disorders in China. Clin Child Psychol Psychiatry 2022; 27:1065-1068. [PMID: 35973072 DOI: 10.1177/13591045221119936] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Affiliation(s)
- Bing-Xiang Ma
- 232830The First Affiliated Hospital of Henan University of traditional Chinese Medicine, Zhengzhou, China
| | - Ya-Min Kong
- 232830The First Affiliated Hospital of Henan University of traditional Chinese Medicine, Zhengzhou, China
| | - Xue-Yuan Zhang
- 232830The First Affiliated Hospital of Henan University of traditional Chinese Medicine, Zhengzhou, China
| | - Yong-Ting Zhang
- 232830The First Affiliated Hospital of Henan University of traditional Chinese Medicine, Zhengzhou, China
| | - Qing He
- 232830The First Affiliated Hospital of Henan University of traditional Chinese Medicine, Zhengzhou, China
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Zonneveld E, van Schelven F, Boeije H. Effects of the COVID-19 pandemic on quality of life among relatives of individuals with intellectual disabilities: A longitudinal study. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2022; 36:68-77. [PMID: 36134473 PMCID: PMC9539069 DOI: 10.1111/jar.13035] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/28/2022] [Revised: 08/31/2022] [Accepted: 09/06/2022] [Indexed: 11/30/2022]
Abstract
Background The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support.
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Affiliation(s)
- Ellen Zonneveld
- Department Perspective of patients and clients in healthcare, Netherlands Institute for Health Services Research (Nivel), Utrecht, the Netherlands
| | - Femke van Schelven
- Department Perspective of patients and clients in healthcare, Netherlands Institute for Health Services Research (Nivel), Utrecht, the Netherlands
| | - Hennie Boeije
- Department Perspective of patients and clients in healthcare, Netherlands Institute for Health Services Research (Nivel), Utrecht, the Netherlands
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van den Driessen Mareeuw FA, Coppus AMW, Delnoij DMJ, de Vries E. Good health care for a good life? The case of down syndrome. JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES 2022. [DOI: 10.1111/jppi.12443] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/28/2022]
Affiliation(s)
| | - Antonia M. W. Coppus
- Department for Primary and Community Care Radboud University Medical Center Nijmegen The Netherlands
- Dichterbij Center for the Intellectually Disabled Gennep The Netherlands
| | - Diana M. J. Delnoij
- Erasmus School of Health Policy & Management Erasmus University The Netherlands
- National Health Care Institute The Netherlands
| | - Esther de Vries
- Tranzo, Scientific Center for Care and Wellbeing Tilburg University Tilburg The Netherlands
- Jeroen Bosch Hospital Hertogenbosch The Netherlands
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Moonen X, Festen D, Bakker-van Gijsel E, Vervoort-Schel J. A Dutch Perspective on Two Health Related Issues Regarding Children and Adolescents with Intellectual Disabilities. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 19:11698. [PMID: 36141966 PMCID: PMC9517279 DOI: 10.3390/ijerph191811698] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/13/2022] [Revised: 09/13/2022] [Accepted: 09/14/2022] [Indexed: 06/16/2023]
Abstract
In this opinion article, we want to inspire readers by highlighting recent Dutch developments about two important health related issues regarding the quality of life of children and adolescents with intellectual disabilities. Firstly we focus on the prevention, treatment and reduction of (disability-related) somatic and psychological problems by specialized physicians for people with intellectual disabilities. Secondly, we emphasize the importance of the prevention of adverse childhood experiences and the promotion of protective and compensatory experiences. Subsequently, we stress the need for trauma informed care to support children and adolescents with intellectual disabilities who encounter adverse events. A specialized and multidisciplinary approach is advised as is the need for promoting healthy (family) relations with a focus on (co)regulation and connection as a basis for recovery.
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Affiliation(s)
- Xavier Moonen
- Ben Sajet Center, Zwanenburgwal 206, 1011 JH Amsterdam, The Netherlands
- Department of Child Development and Education, University of Amsterdam, 1018 WS Amsterdam, The Netherlands
- Koraal Center of Expertise, De Hondsberg, Hondsberg 5, 5062 JT Oisterwijk, The Netherlands
| | - Dederieke Festen
- Erasmus MC, University Medical Center Rotterdam, Postbus 2040, 3000 CA Rotterdam, The Netherlands
| | | | - Jessica Vervoort-Schel
- Ben Sajet Center, Zwanenburgwal 206, 1011 JH Amsterdam, The Netherlands
- Department of Child Development and Education, University of Amsterdam, 1018 WS Amsterdam, The Netherlands
- Koraal Center of Expertise, De Hondsberg, Hondsberg 5, 5062 JT Oisterwijk, The Netherlands
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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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Burke T, Deffew A, Stafford O, Docherty C, Burke S, Mostert R, van Loon J, Lombardi M, Vaughan M, Brickell R, Keogh M, Mahon W, O'Halloran D. Quality of Life Outcomes in a Community Cohort of Adults With an Intellectual Disability Using the Personal Outcome Scale. FRONTIERS IN REHABILITATION SCIENCES 2022; 3:848492. [PMID: 36188891 PMCID: PMC9397816 DOI: 10.3389/fresc.2022.848492] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 01/04/2022] [Accepted: 02/22/2022] [Indexed: 11/19/2022]
Abstract
Objectives Quality of life (QoL) is a multi-dimensional phenomenon composed of core domains that are influenced by personal characteristics, values, and environmental contributions. There are eight core domains of QoL aligned with both the United Nations and the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). The Personal Outcome Scale (POS), is a semi-structured self and proxy instrument that specifically measures these aspects of QoL for people with an intellectual disability. Methods A total of 85 people with an intellectual disability and their primary keyworker (n = 85) took part in this study. A convenience sample recruitment strategy was employed to recruit participants during the calendar year from January–December 2020. Participants completed the self-report and proxy POS, and clinic-demographic data was also considered. Results QoL is higher in those who have a dedicated service planner and also for those with a less severe to profound disability. People who were in gainful employment reported significantly higher QoL as did those availing of outreach and residential services, over and above local services. Conclusions This research shows that there are distinct and specific factors that relate to QoL for people with an intellectual disability community-based services in Ireland. Future research could aim to investigate these longitudinally, and specifically how QoL relates to cognitive and functional outcomes.
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Affiliation(s)
- Tom Burke
- KARE Services, Kilcullen, Ireland
- School of Psychology, John Henry Newman Building, University College Dublin, Dublin, Ireland
- School of Psychology, National University of Ireland Galway, Galway, Ireland
- *Correspondence: Tom Burke
| | - Andrew Deffew
- KARE Services, Kilcullen, Ireland
- School of Psychology, University of Limerick, Limerick, Ireland
| | - Owen Stafford
- KARE Services, Kilcullen, Ireland
- School of Psychology, John Henry Newman Building, University College Dublin, Dublin, Ireland
| | - Caroline Docherty
- School of Psychology, National University of Ireland Galway, Galway, Ireland
| | | | | | | | | | | | | | | | | | - David O'Halloran
- KARE Services, Kilcullen, Ireland
- School of Psychology, John Henry Newman Building, University College Dublin, Dublin, Ireland
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Fucà E, Costanzo F, Ursumando L, Vicari S. Parenting Stress in Mothers of Children and Adolescents with Down Syndrome. J Clin Med 2022; 11:jcm11051188. [PMID: 35268278 PMCID: PMC8911183 DOI: 10.3390/jcm11051188] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/15/2022] [Revised: 02/18/2022] [Accepted: 02/21/2022] [Indexed: 12/04/2022] Open
Abstract
Parenting stress has deleterious effects on parents, children, and overall family functioning. Parents of children with intellectual disability, including Down Syndrome (DS), show higher levels of parenting stress than parents of typically developing children. This research aimed to (i) evaluate parenting stress levels in a group of mothers of youths with DS using a parent-report questionnaire, (ii) identify children’s individual and clinical features associated with maternal stress, and (iii) identify specific situational life/demographics factors related to maternal stress. Seventy-eight youths with DS underwent a neuropsychological evaluation, whereas mothers completed questionnaires for the assessment of parenting stress and of the child’s emotional and behavioral problems. We found that Parent–Child Difficult Interaction was the domain with the highest percentage of clinical scores (39.7%). Both internalizing and externalizing problems correlated with maternal stress, as well as autistic symptoms. The levels of maternal stress were not associated with any socio-demographic variable. After controlling for child-related correlates of maternal stress and for mothers’ age and education level, unemployed mothers exhibited higher levels of parental distress than employed mothers. The present study highlights that unemployment is related with parenting stress and potentially amenable to policy interventions supporting parents in combining work and family care.
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Affiliation(s)
- Elisa Fucà
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children’s Hospital, IRCCS, 00146 Rome, Italy; (E.F.); (L.U.); (S.V.)
| | - Floriana Costanzo
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children’s Hospital, IRCCS, 00146 Rome, Italy; (E.F.); (L.U.); (S.V.)
- Correspondence: ; Tel.: +39-06-6859-7091
| | - Luciana Ursumando
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children’s Hospital, IRCCS, 00146 Rome, Italy; (E.F.); (L.U.); (S.V.)
| | - Stefano Vicari
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children’s Hospital, IRCCS, 00146 Rome, Italy; (E.F.); (L.U.); (S.V.)
- Department of Life Sciences and Public Health, Catholic University, 00168 Rome, Italy
- Casa San Giuseppe, Centro di Riabilitazione Opera Don Guanella, 00165 Rome, Italy
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Beheshti SZ, Hosseini SS, Maroufizadeh S, Almasi-Hashiani A. Occupational performance of children with autism spectrum disorder and quality of life of their mothers. BMC Res Notes 2022; 15:18. [PMID: 35033183 PMCID: PMC8760686 DOI: 10.1186/s13104-021-05890-4] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/03/2021] [Accepted: 12/21/2021] [Indexed: 11/10/2022] Open
Abstract
OBJECTIVES Limited studies were found to investigate the occupational performance of autistic children and their parents' quality of life. Therefore, this study aimed to investigate occupational performance of children with Autism Spectrum Disorder (ASD) and QoL of their mothers. RESULTS In this study, 88 participants were selected from autism centers in Arak, Iran, 2020. The Canadian Occupational Performance Measure (COPM) and the parent version of Quality of Life in Autism Questionnaire (QoLA-P) were used to assess the occupational performance of ASD children and their mothers QoL. QoLA-P consists of parts A which is related to the quality of life and part-B related to the problems that these children have and are related to the parents or their caregivers. Regarding occupational performance, the first priority of mothers is self-care with frequency 64.8%. The finding suggested a significant correlation between total function score of COPM and the score of part-A (r = 0.227, p = 0.033) of QoLA-P. Also, the results revealed a significant correlation between the total satisfaction score of COPM and the score of part-A (r = 0.236, p = 0.026) and part-B of QoLA-P questionnaire (r = 0.231, p = 0.030). The mothers' first priority is self-care and, the total satisfaction and function score of COPM showed a significant correlation with mothers' QoL.
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Affiliation(s)
- Seyedeh Zeinab Beheshti
- School of Rehabilitation, Department of Occupational Therapy, Arak University of Medical Sciences, Arak, Iran
| | | | - Saman Maroufizadeh
- School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran
| | - Amir Almasi-Hashiani
- School of Health, Department of Epidemiology, Arak University of Medical Sciences, Arak, Iran
- Traditional and Complementary Medicine Research Center, Arak University of Medical Sciences, Arak, Iran
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Deb S, Limbu B. Support staff liaising effectively with family caregivers: Findings from a co-design event and recommendation for a staff training resource. Front Psychiatry 2022; 13:977442. [PMID: 36245872 PMCID: PMC9555056 DOI: 10.3389/fpsyt.2022.977442] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2022] [Accepted: 08/16/2022] [Indexed: 12/02/2022] Open
Abstract
A high proportion of people with intellectual disabilities (ID) and autism spectrum disorder (ASD) are prescribed psychotropic medications such as antipsychotics, antidepressants etc., outside their licensed indications, primarily for the management of behaviors that challenge (BtC) in the absence of a psychiatric disorder. Examples of BtC are aggression to people and property or self-injury. BtC could be challenging to manage and may cause the person with ID/ASD and their caregivers distress, breakdown of community placement leading to hospitalization, and restrictive practices such as restraint or inappropriate medication use. Caregivers play a pivotal role in the prescribing process. However, many family caregivers feel that they have not been fully involved in the shared decision-making process about the care planning of their relatives with ID/ASD. To address the public health concern regarding the overuse of off-license prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities) for direct care staff who support people with ID/ASD within community settings. We used co-production and a modified Experience-Based Co-Design (EBCD) method to develop SPECTROM, which involved a literature review, four focus groups and a co-design event day involving 26 stakeholders. Recommendations from the co-design event day were analyzed by a Programme Development Group (PDG) consisting of 21 stakeholders who made the final recommendations to the project team regarding the contents and the format of SPECTROM, which was finalized after receiving feedback from further 59 stakeholders. SPECTROM has web-based resources introduced through two core modules in face-to-face workshops/training. A small field test found SPECTROM was effective in improving staff's knowledge of psychotropic medications and attitude toward BtC and people with ID (p < 0.05). One of the 14 STOMP modules is "Effective liaison with family carers and advocates". In this paper, we have presented data from the co-design event day recommendations for this particular module. The group recommended ways to improve collaborative working and effective shared decision-making with family caregivers and people with ID/ASD.
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Affiliation(s)
- Shoumitro Deb
- Department of Brain Sciences, Faculty of Medicine, Imperial College London, London, United Kingdom
| | - Bharati Limbu
- Department of Brain Sciences, Faculty of Medicine, Imperial College London, London, United Kingdom
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Vervoort-Schel J, Mercera G, Wissink I, Van der Helm P, Lindauer R, Moonen X. Prevalence of and relationship between adverse childhood experiences and family context risk factors among children with intellectual disabilities and borderline intellectual functioning. RESEARCH IN DEVELOPMENTAL DISABILITIES 2021; 113:103935. [PMID: 33756254 DOI: 10.1016/j.ridd.2021.103935] [Citation(s) in RCA: 12] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/30/2020] [Revised: 01/12/2021] [Accepted: 03/08/2021] [Indexed: 06/12/2023]
Abstract
BACKGROUND Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). AIMS To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. METHODS AND PROCEDURES 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. OUTCOMES AND RESULTS 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0-8) and in children with BIF 2.88 (range 0-7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. CONCLUSIONS AND IMPLICATIONS The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
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Affiliation(s)
- Jessica Vervoort-Schel
- Koraal Centre of Expertise, De Hondsberg, Hondsberg 5, 5062 JT Oisterwijk, the Netherlands; Department of Child Development and Education, University of Amsterdam, Nieuwe Achtergracht 127, 1018 WS Amsterdam, the Netherlands.
| | - Gabriëlle Mercera
- Koraal Centre of Expertise, De Hondsberg, Hondsberg 5, 5062 JT Oisterwijk, the Netherlands; Department of Psychiatry and Neuropsychology, Maastricht University, Vijverdalseweg 1, 6226 NB Maastricht, the Netherlands
| | - Inge Wissink
- Department of Child Development and Education, University of Amsterdam, Nieuwe Achtergracht 127, 1018 WS Amsterdam, the Netherlands
| | - Peer Van der Helm
- Expert Centre Social Work and Applied Psychology, Professional University of Applied Sciences Leiden, Zernikedreef 11, 2333 CK Leiden, the Netherlands; Fier, National Expertise and Treatment Centre, Holstmeerweg 1, 8936 AS Leeuwarden, the Netherlands; Amsterdam UMC, University of Amsterdam, Department Child and Adolescent Psychiatry, Meibergdreef 5, 1105 AZ Amsterdam, the Netherlands
| | - Ramón Lindauer
- Amsterdam UMC, University of Amsterdam, Department Child and Adolescent Psychiatry, Meibergdreef 5, 1105 AZ Amsterdam, the Netherlands; Levvel, Academic Centre for Child and Adolescent Psychiatry, Meibergdreef 5, 1105 AZ Amsterdam, the Netherlands
| | - Xavier Moonen
- Koraal Centre of Expertise, De Hondsberg, Hondsberg 5, 5062 JT Oisterwijk, the Netherlands; Department of Child Development and Education, University of Amsterdam, Nieuwe Achtergracht 127, 1018 WS Amsterdam, the Netherlands
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Ebadi M, Samadi SA, Mardani-Hamooleh M, Seyedfatemi N. Living under psychosocial pressure: Perception of mothers of children with autism spectrum disorders. JOURNAL OF CHILD AND ADOLESCENT PSYCHIATRIC NURSING 2021; 34:212-218. [PMID: 33734525 DOI: 10.1111/jcap.12310] [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: 08/30/2020] [Revised: 01/19/2021] [Accepted: 03/01/2021] [Indexed: 11/30/2022]
Abstract
PROBLEM Mothers of children with autism spectrum disorders (ASD) experience higher levels of stress compared to mothers of typically developing children. This study identified mothers' perceptions of the stress caused by lifelong caregiving to a child with ASD. METHODS The current study was conducted in Iran using qualitative methods. In-depth, semi-structured interviews were conducted with twenty-seven mothers. Content analysis was used to analyze and categorize the data. FINDINGS The main categories included (1) psychological concerns and suffering and (2) sociocultural challenges. The first category consisted of two subcategories, including disruption in mother-child relationships and fears and worries. Also, the second category included subcategories of cultural constraints and lack of social support. CONCLUSIONS In this study, the mothers of autistic children experienced psychosocial pain. Identifying the stressors for these mothers could lead to appropriate planning to provide psychological, social, and cultural support for them in Iranian society.
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Affiliation(s)
- Mahsa Ebadi
- Department of Psychiatric Nursing, Nursing Care Research Center, Iran University of Medical Sciences, Tehran, Iran
| | - Sayyed Ali Samadi
- Department of Nursing and Health Research, Centre for Intellectual and Developmental Disabilities, The Ulster University, Northern Ireland, UK
| | - Marjan Mardani-Hamooleh
- Department of Psychiatric Nursing, Nursing Care Research Center, Iran University of Medical Sciences, Tehran, Iran
| | - Naima Seyedfatemi
- Department of Psychiatric Nursing, Nursing Care Research Center, Iran University of Medical Sciences, Tehran, Iran
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Jenaro C, Flores N, Gutiérrez-Bermejo B, Vega V, Pérez C, Cruz M. Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2020; 17:E9007. [PMID: 33287284 PMCID: PMC7731363 DOI: 10.3390/ijerph17239007] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 11/02/2020] [Revised: 11/27/2020] [Accepted: 11/28/2020] [Indexed: 11/17/2022]
Abstract
(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index-Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.
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Affiliation(s)
- Cristina Jenaro
- INICO/Faculty of Psychology, Universidad de Salamanca, 37005 Salamanca, Spain;
| | - Noelia Flores
- INICO/Faculty of Psychology, Universidad de Salamanca, 37005 Salamanca, Spain;
| | - Belén Gutiérrez-Bermejo
- Faculty of Psychology, Universidad Nacional de Educación a Distancia (UNED), 28040 Madrid, Spain;
| | - Vanessa Vega
- Faculty of Education, Pontificia Universidad Católica de Valparaíso, Viña del Mar 1290, Chile;
| | - Carmen Pérez
- Faculty of Nursing, Universidad Autónoma de San Luis Potosí, San Luis Potosí 78240, Mexico; (C.P.); (M.C.)
| | - Maribel Cruz
- Faculty of Nursing, Universidad Autónoma de San Luis Potosí, San Luis Potosí 78240, Mexico; (C.P.); (M.C.)
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