Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review
Abstract
:1. Introduction
2. Methods
2.1. Protocol and Registration
2.2. Study Selection
2.3. Quality Assessment
3. Results
3.1. Study Selection
3.2. Study Characteristics
Authors (Year) | Location | Study Design | Sample Characteristics N Age = M (SD) | Parental Involvement | Intervention | Setting | Length/Frequency | Instruments | Relevant Findings |
---|---|---|---|---|---|---|---|---|---|
Aandersson et al. (2017) [39] | Sweden | Qualitative study | 56 Parents of Children with ASD (n = 56 Children; Mage ≈ 9 Years, Female = 23.21%) | Indirect | Early Intervention, ABA | Clinics | 2 Years/25 h/Week | Semi-Structured Questionnaire | Thematic Content Analysis Too much responsivity and lack of knowledge about intervention methods. Perceived support as unequal, uncoordinated, and with variations. Unequal treatments depending on socioeconomic status. lack of individualization of interventions. |
Baghdadli et al. (2014) [10] | France | Cross-Sectional | 152 Mothers (92.12%) and 13 Fathers of Adolescents with ASD (n = 152 Adolescents; Mage = 15 Years; SD = 1.6, Female = 17.8%) | None | Mixed | Clinics | NA/31.3 5 h/week | Par-DD-QoL | Polytomic Logistic Regression Analysis A higher number of hours of specialized intervention is associated with lower parental emotional QoL (ORa = 2.69, 95% CI = 1.1–5.9, p = 0.04). |
Derguy et al. (2018) [40] | France | Cross-Sectional | 115 Parents (Female = 63.5%) of Children with ASD (n = 78 Children; Mage = 6.3, SD = 2.3, Female = 23.1%) | None | Psycho-Educational Intervention (74% of the Sample) | NA | NA | WHOQOL-BREF | Hierarchical Regression Analyses Parents showed better QoL whether their child received psychoeducation intervention (β = 0.25, p = 0.010). |
Due et al. (2018) [41] | Australia | Mixed-Method Study | 27 Parents (Female = 48.14%) of Children with ASD (n = 27 Children; Mage = 5, SD = 2.0, Female = 18.52%) | Direct | Early intervention | Clinics | NA | Quality of Life in Autism Questionnaire; Semi-Structured Interviews | Thematic Content Analysis Parental direct involvement in the intervention increased several aspects of their QoL (e.g., sense of competence and confidence as parents, community participation). |
Hwang et al. (2015) [42] | Taiwan | Pre-Post Design | 6 Mother-Child dyads (Children with ASD; Age Range = 8–15 Years, Female = 20%) | Direct | Parent-Mediated Home-Based Training | Home | 12 Months | Family Quality of Life (FQoL) | Paired Sample Wilcoxon Signed Rank Test The parent-mediated home-based training was associated with marginally significant increase in family quality of life. |
Ji et al. (2014) [43] | China | Quasi-Experimental Design | 22 Caregivers (Female = 90.9%) of Children with ASD (Intervention Group, n = 22 Children with ADS; Mage = 4.93, SD = 2.03, Female = 18.2%) and 20 Caregivers (Female = 90.0%) of Children with ASD (control group, n = 20 Children with ASD, Mage = 5.65, SD = 1.74, Female = 15%) | Direct | Parent Education Program | Clinics | 8 Weeks | Caregiver Burden Index (CBI) | Independent-Samples t-test Parents’ mental HRQOL significantly improved after the intervention (t = −2.138; p = 0.039). Parents’ physical HRQOL did not improve after the intervention (t = −1463; p = 0.151). |
Jones et al. (2017) [44] | Canada | Cross-Sectional | 151 Caregivers (Female = 78.95%) of children with ASD (n = 151 Children with ASD; Mage = 7.3, SD = 3.9, Female = 23.84%) | Indirect | None/Intensive Behavioural Intervention, Intervention from a Speech and Language Pathologist, Occupational Therapy, Physiotherapy Services | NA | NA | Family Quality of Life Survey (FQOLS) | Correlation Analyses Time on waiting list was not significatively associated with family QoL. |
Leadbitter et al. (2018) [45] | United Kingdom | Pre-Trial Research Design | 152 Parents of Children with ASD (n = 152 Children with ASD, Mage = 45 Months, Female = 9.21%) | Direct | Parent-Mediated Video-Aided Pre-School Communication-Focused Intervention | Clinics | 13 Months | Autism Family Experience Questionnaire (AFEQ) | Effect Estimation Analysis AFEQ total score improved significantly after the treatment and at the 6-year follow-up. |
Leadbitter et al. (2020) [46] | United Kingdom | Qualitative Study | 18 Parents (Female = 66.67%) of Children with ASD (n = 12 Children with ASD, Mage = 44.42 Months, SD = 7.04, Female = 8.33%) | Direct | Paediatric Autism Communication Therapy | NA | 12 Months | Semi-Structured Interview | Thematic Content Analysis Post-intervention improved family wellbeing. |
Mathew et al. (2019) [47] | Australia | Cross-Sectional | 161 Parents (Female = 90.7%) of Children with ASD (n = 117 Children with ASD, Mage = 4.13, SD = 0.53, Female = 17.9%) | Direct | Early Intervention using the Early Start Denver Model | Clinics | NA | Parenting Sense of Competence Scale (PSOC) | Independent-Samples t-test Significantly greater levels of depression symptoms, anxiety, and stress among mothers (who have the primary caregiver role) than among fathers of children with ASD. |
McConkey (2020) [48] | United Kingdom | Validation Study | 449 Parents (Female = 92.6%) of Children with ASD or with Suspected ASD (n = 449 Children with ASD, Age Range = 2–11 years, Female = 25.6%) | Direct | Family-Centred Intervention | Home | Median = 8 Weeks | Eight Items Questionnaire | Step-Wise, Linear Regression Parental with adequate or poor engagement in intervention showed significantly lower parental well-being than those with good engagement in intervention (β = 4.72; SE 1.54; p < 0.002). |
McConkey et al. (2020) [49] | United Kingdom | Observational Study | 92 Families with Children with ASD (n = 96 Children, Mage = 7.7, Female = 20.8%) | Direct | Post-Diagnostic Support | Home | 12 Months | Two Rating Scales | Thematic Content Analysis Parents reported higher self-confidence and reduced stress within the family after the intervention. |
McPhilemy & Dillenburger (2013) [50] | United Kingdom | Observational Study | 15 Families with Children or Adolescents with ASD (n = 17 Children or Adolescents with ASD, Mage= 38 Months, Age Range = 2–20 Years, Female = 11.76%) | Direct | ABA-based Home Program | Home | M = 48 Months | Questionnaire | Thematic Content Analysis ABA-based home program had significant positive impact on family quality of life. |
Milbourn et al. (2017) [51] | Australia/Sweden | Observational/Qualitative Study | 521 Caregivers (Female = 81%) with Children with ASD (n = 400 Children with ASD (76.78%), Mage = 9.92, SD = 4.17, Female = 17%) | Direct | Mixed | NA | NA | Multidimensional Questionnaire | Thematic Content Analysis Respondents indicated that early interventions improved their family life (71.3% answered “somewhat” or “definitely”). Respondents agreed that earlier access to intervention would have led to improved child’s quality of life (78.4% answered “somewhat” or “definitely”). |
Moody et al. (2019) [52] | United States | Randomised Controlled Trial | 67 Parents (Active Group, Female = 91.0%; Waitlist, Female = 88.2%) of Children with ASD (n = 33 Intervention Group, Female = 18.2%) (n = 67 Children with ASD, Range age 2–8 Years, Female = 14.7%) | Direct | Colorado Parent Mentoring (CPM) Program | Mixed | Six Months | Family Quality of Life Survey (FQOLS) | Mixed Modelling CPM program positively impacted several areas of family quality of life, regardless the amount of formal intervention received. |
Paynter et al. (2018) [53] | Australia | Mixed Methods | 26 Fathers of Children with ASD (n = 26 Children with ASD, Age Range 2.5–6 Years, Female = 26.4%) | Indirect | Early Intervention | Clinics | NA | Parenting Stress Index (PSI) | Thematic Content Analysis According to some fathers’ family adaptation was negatively affected by inaccessible and/or gender-biased formal supports. |
Roberts et al. (2011) [54] | Australia | Randomised Controlled Trial | 84 Children with ASD (n = 27 Home-Based Group, n = 29 Centre-Based Group, n = 28 Control, Mage = 3.5, SD = 0.61, Female = 9.5%) | Direct and Indirect | Early Intervention (Home-based Intervention vs. Centre-Based Intervention) | Home vs. Clinical Centres | 1 Year (40 Weeks) | Family Quality of Life Survey (FQOLS), Parenting Stress Index (PSI) | Analysis of Covariance Parents of children who followed the centre-based intervention showed significant improvements in family QoL. Parents of children who followed the home-based intervention showed the least improvement in family QoL over all groups. |
Measures of QoL | Construct Dimensions | Studies | No. of Studies | |
---|---|---|---|---|
Family Quality of Life | Caregiver Burden Index (CBI) [55] | Time Burden, Burden of Personal Development Limitations, Physical Burden, Social Burden, Emotional Burden | Ji et al. (2014) [43] | 1 |
Family Quality of Life (FQOL) [37] | Emotional Wellbeing, Family Wellbeing, Parenting Wellbeing, Physical/Material Wellbeing, Disability-Related Wellbeing | Hwang et al. (2015) [42]; Moody et al. (2019) [52]; Roberts et al. (2011) [54] | 3 | |
Family Quality of Life Survey (FQOLS) [56] | About Your Family, Health of the Family, Support from Disability-Related Services, Leisure and Recreation, Community Interaction, Overall Family Quality of Life | Jones et al. (2017) [44] | 1 | |
Par-DD-QoL (from Par-ENT-QoL) [57] | Emotional Score, Daily Disturbances Score, Global Score | Baghdadli et al. (2014) [10] | 1 | |
Parenting Sense of Competence Scale (PSOC) [58] | Satisfaction, Interest, Efficacy | Mathew et al. (2019) [47] | 1 | |
Parenting Stress Index (PSI) [38] | Parental Distress, Parent-Child Dysfunctional Interaction, Difficult Child | Paynter et al. (2018) [53]; Roberts et al. (2011) [54] | 2 | |
WHOQOL-BREF [38] | Four Domains (Physical, Psychological, Social Relationships, Environment) | Derguy et al. (2018) [40] | 1 | |
Quality of Life in Autism questionnaire (QoLA) [59] | Subscale A (Quality of Life), Subscale B (Impact of ASD Symptoms) | Due et al. (2018) [41] | 1 |
3.3. Quality Assessment
3.4. Main Findings
3.4.1. No Parental Involvement
3.4.2. Indirect Parental Involvement
3.4.3. Direct Parental Involvement
4. Discussion
5. Limitations
6. Conclusions and Future Directions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Author (Year) | Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Q10 | Q11 | Q12 | Q13 * | Q14 | Q15 | Q16 | Q17 | Q18 | Q19 * | Q20 | Quality Score/20 | Quality Rating |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Aandersson et al. (2017) [39] | Y | Y | N | N | Y | N | N | N | N | N | N | Y | N | N | Y | Y | Y | Y | N | Y | 11 | Moderate |
Baghdadli et al. (2014) [10] | Y | N | N | Y | Y | Y | N | N | N | Y | N | Y | N | N | Y | Y | Y | Y | N | Y | 13 | Moderate |
Derguy et al. (2018) [40] | Y | Y | Y | Y | Y | Y | N | Y | Y | Y | N | Y | N | N | Y | Y | Y | Y | N | Y | 17 | High |
Due et al. (2018) [41] | Y | Y | N | N | Y | N | N | N | N | N | N | N | N | N | N | Y | Y | Y | N | Y | 10 | Moderate |
Hwang et al. (2015) [42] | Y | Y | N | Y | Y | N | N | Y | Y | N | Y | Y | N | N | Y | Y | Y | Y | na | Y | 14 | Moderate |
Ji et al. (2014) [43] | N | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y | Y | Y | Y | N | Y | 19 | High |
Jones et al. (2017) [44] | Y | Y | N | Y | Y | Y | N | Y | Y | N | N | Y | N | N | Y | Y | Y | Y | N | Y | 15 | High |
Leadbitter et al. (2018) [45] | Y | Y | N | N | Y | N | N | N | Y | N | N | Y | N | N | Y | Y | Y | N | N | Y | 11 | Moderate |
Leadbitter et al. (2020) [46] | Y | Y | N | Y | Y | Y | N | Y | N | N | N | Y | N | N | Y | Y | Y | Y | N | Y | 14 | Moderate |
Mathew et al. (2019) [47] | Y | Y | N | Y | Y | Y | N | Y | Y | Y | N | Y | N | N | Y | Y | Y | Y | N | Y | 16 | High |
McConkey (2020) [48] | N | N | N | N | Y | Y | N | N | N | N | Y | Y | N | N | Y | Y | N | N | N | Y | 9 | Moderate |
McConkey et al. (2020) [49] | N | Y | N | Y | N | N | N | N | N | N | N | Y | N | N | Y | N | N | N | N | Y | 7 | Low |
McPhilemy & Dillenburger (2013) [50] | N | N | N | N | Y | N | N | N | N | N | N | Y | N | N | Y | Y | Y | N | na | Y | 7 | Low |
Milbourn et al. (2017) [51] | Y | Y | N | Y | N | N | N | na | na | N | N | N | N | N | Y | Y | Y | Y | N | Y | 10 | Moderate |
Moody et al. (2019) [52] | Y | Y | N | Y | Y | Y | N | Y | Y | Y | Y | Y | N | N | Y | Y | Y | Y | N | Y | 17 | High |
Paynter et al. (2018) [53] | Y | Y | N | Y | Y | Y | na | Y | Y | N | Y | Y | N | N | Y | Y | Y | Y | N | Y | 16 | High |
Roberts et al. (2011) [54] | Y | Y | Y | Y | Y | Y | N | Y | Y | Y | Y | Y | N | N | Y | Y | Y | Y | N | Y | 18 | High |
Mean | 13.18 | |||||||||||||||||||||
Standard Deviation | 3.68 |
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Musetti, A.; Manari, T.; Dioni, B.; Raffin, C.; Bravo, G.; Mariani, R.; Esposito, G.; Dimitriou, D.; Plazzi, G.; Franceschini, C.; et al. Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review. J. Pers. Med. 2021, 11, 894. https://doi.org/10.3390/jpm11090894
Musetti A, Manari T, Dioni B, Raffin C, Bravo G, Mariani R, Esposito G, Dimitriou D, Plazzi G, Franceschini C, et al. Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review. Journal of Personalized Medicine. 2021; 11(9):894. https://doi.org/10.3390/jpm11090894
Chicago/Turabian StyleMusetti, Alessandro, Tommaso Manari, Barbara Dioni, Cinzia Raffin, Giulia Bravo, Rachele Mariani, Gianluca Esposito, Dagmara Dimitriou, Giuseppe Plazzi, Christian Franceschini, and et al. 2021. "Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review" Journal of Personalized Medicine 11, no. 9: 894. https://doi.org/10.3390/jpm11090894