Stress And Psychological Well- Being In Families Of Children With
@ProfRHastings Stress and psychological wellbeing in families of children with autism Richard Hastings XX Congreso Nacional AETAPI 2022 18 November, Madrid
The family system Family systems theory suggests that family members are inter-dependent. Well-being of one member will impact across the system on other individuals/sub-systems Therefore, an interest in the families of children with autism and how they might be affected ALSO, well-being and actions of other family members will affect children with autism
Autism Moms Have Stress Similar To Combat Soldiers by Michelle Diament November 10, 2009
Bias in research Small size of samples – too few people Representativeness of the autism families – have people with fewer or more problems been more likely to participate? Representativeness of the comparison group How do we know families involved in the research are caring for a child with autism? File drawer problem – more likely to publish studies where interesting differences are found
ONS CYP MH surveys UK ONS surveys 1999 and 2004 N 18,415 children age 5-16 years, 50.6% boys; population based sample across the UK; high response rate (80% across both surveys) Emerson identified a group with likely intellectual disability [ID] (N 641), 3.5% of total sample 98 children met clinical criteria for diagnosis of ASD and 52% of these children were also in the ID group Totsika, Hastings et al (2011): 4 group comparison of maternal well-being
Mothers’ MH problems 50 40 30 % Emotional disorder 20 10 0 ASD ASD ID ID Control
LSAC – Fathers Seymour et al., 2017 RIDD Longitudinal Study of Australian Children Children age 8-9 years and their fathers; 159 ASD fathers, 6578 non-disability fathers 97% ASD fathers in paid employment, 99% in two parent families Autism self-reported by parents Psychological distress of fathers, measured using Kessler 6
K6 cut-offs % 16 14 12 ASD fathers Non-ASD fathers Symptomatic Adjusted OR 1.71 [1.03, 2.83] 10 8 Clinical Adjusted OR 3.81 [1.47 9.89] 6 4 2 0 Clinical range Symptomatic
Shivers et al 2019 Meta-analysis of 69 studies comparing siblings of children with and without ASD Outcome Hedge’s g 95% CI Overall functioning -0.26 -0.37, -0.15 Internalising problems -0.29 -0.41, -0.08 Externalising behaviour problems -0.08 -0.24, 0.08
SDQ - 168 mothers’ reports (% clinical range)
SDQ - 130 fathers’ reports
SDQ – 60 self-reports (% clinical range)
Why more “stress”? Socio-economic status (poverty) is a big factor The child with ASD’s behaviour problems Lack of support from/access to health, social care, and education services The nature of caring – more hours of “care” per week, more daily physical and personal care Other people’s attitudes - affiliate stigma Worry about future care Less social support available Possible contribution of Broad Autism Phenotype?
A mental health inequality Nearly all of the factors/reasons for increased “stress” in parents (especially mothers) are associated with ASD, but they are not the ASD These factors can be changed/improved or “fixed” with the right support Therefore, family members (mothers and fathers, possibly siblings) of children with ASD as a group face a mental health inequality – a difference that exists that does not have to exist
Mothers’ MH problems 50 40 30 % Emotional disorder 20 10 0 ASD ASD ID ID Control
Mothers’ positive MH 50 40 % Emotional disorder % High Positive Mental Health 30 20 10 0 ASD ASD ID ID Control
Family “stress” The majority of parents and siblings of children with ASD are not “suffering” from psychological problems Mothers of children with ASD are 2-3 times more likely, and fathers 1.5 times more likely, to report worrying levels of psychological distress Parents of children with ASD also experience and report significant positivity - at least as much as other parents Most of the factors that increase parents’ psychological stress can be changed Family stress also has consequences for the psychological well-being and mental health of children with ASD
What can we do? Multiple interventions designed to support the family system. No silver bullet Stress management/coping skills for parents Parent training focused on managing child behaviour problems (all children in the family) Strengthen family relationships and family resilience Improve support from, consistency, knowledge within, and personalised approach of services/professionals Help parents to get into work and to stay in work Awareness-raising (changing attitudes) Helping families prepare for future care Social support between families (e.g., Parent-to-Parent)
R.Hastings@warwick.ac.uk @ProfRHastings
and fathers 1.5 times more likely, to report worrying levels of psychological distress Parents of children with ASD also experience and report significant positivity - at least as much as other parents Most of the factors that increase parents' psychological stress can be changed Family stress also has consequences for the psychological
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