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It is widely accepted that many challenges faced by people with disabilities and their families are as a result of, or exacerbated by, living in a society which disables them (Llewellyn, 2010). For example, a wheelchair user is disabled if they cannot enter a building because it does not have level access or a wheelchair lift. The theory that attributes disability entirely to the person’s environment is called the social model of disability (Oliver, 2013).

35 In this thesis, I acknowledge the importance of the disabling effect of society on these families’ lives, whilst also recognising that parents of children with disabilities will inevitably experience additional challenges due to their child’s particular disability. This is a bio-psycho-social

perspective of disability. For example, if a child aged four requires a wheelchair for mobility, their parent will experience transport challenges (e.g. requiring a car/taxi that can take wheelchairs, space on buses etc.) and they will be helping them to transfer in/out of the wheelchair and elsewhere. Lower back pain has been reported by 80% of caregivers who provide physical

assistance with transfers to disabled children compared with 40% in caregivers who do not (Tong, 2003). As children age, the caregiver burden may increase, especially if they need ongoing

physical assistance or develop behavioural problems (Brehaut, 2004).

Caregivers experience complex relationships between additional stress, physical burden and sleep deprivation leading to a greater risk of physical and psychological symptoms of ill-health than mothers of typically developing children (Tehee, 2009; Gerstein, 2009). The primary mechanism of caregiver ill-health is stress but there are also physical, social and environmental stressors and complex interrelationships between them (Green, 2007). For example, caregivers report poor sleep quality and high sleep deprivation. In a survey of over 2,000 parents of disabled children, 93% said they were up in the night with their child, and 49% reported health issues as a result of lack of sleep (Family Fund, 2013). The relationship between caregiver sleep quality and depression is bidirectional: poor sleep increases depressive symptoms and these symptoms adversely affect sleep quality (Lee, 2013).

1.4.3 Potential sources of variation in caregiver ill-health

Other factors are also known to affect health, the health of mothers and caregivers of disabled children specifically. Four important factors are presented.

1.4.3.1 Child age

There is substantial evidence that mothers of mixed age, school age and older (≥6 years) disabled children have worse health than other mothers of children in the same age group. Less research has investigated whether this relationship is present during the preschool period, despite the likelihood of key stressors occurring during this period: noticing disability and seeking a diagnosis; adjusting to its implications for the family’s life; navigating the health and social care system to access support and information (outlined in Section 1.3) (Woodman, 2014a; Woodman, 2014b; Contact a Family, 2018). Therefore, symptoms of ill-health associated with stress can reasonably be expected during the preschool period (Baker, 2002; Baker, 2003; Woodman, 2014b).

36 This relative lack of focus on the preschool period may be due to challenges obtaining a sample of adequate size given the difficulties identifying young disabled children (discussed in Section 4.7) (Bailey, 2007). However, advances in medical knowledge and technology have resulted in the earlier diagnosis of developmental delay and disabilities (Committee on Children With Disabilities, 2001; Council on Children With Disabilities, 2006), and in children with complex needs (profound disability) living longer with higher care demands (Yang, 2002; Patja, 2000). For example, since 2003, all pregnant women in England are offered an ultrasound scan to detect foetal

abnormalities (Ward, 2011), and ASD can now be diagnosed in children as soon as 12 months after birth (De Giacomo, 1998; Chawarska, 2007).

A few studies have compared caregiver ill-health between child age groups, but they provide contradictory evidence. Greater stress and psychological distress has been shown in caregivers of young (0-5 years) disabled children compared with school age children (Orr, 1993; Giovagnoli, 2015; Schieve, 2007; Woolfson, 2005); whilst the inverse relationship or no difference between age groups has also been found (Tehee, 2009; Laxman, 2015). Caregiver ill-health may vary by child age due to the changing demands of parenting, in general, and specific requirements of ageing disabled children. For example, the high stress of noticing atypical developmental and seeking a diagnosis during the preschool period compared with the increasing physical demands of caregiving for growing children above the age of five with behavioural or mobility impairments (Fairthorne, 2015b; Graungaard, 2006; Voigt, 2009; Schieve, 2007; Kaya, 2010).

1.4.3.2 Disability-related factors

There is evidence that the relationship of caregiving to ill-health varies by disability diagnosis and other disability characteristics e.g. behavioural problems and disability severity (due to greater caregiving demands, as outlined in Section 1.4). Mothers of children with ASD are frequently found to have poorer (largely psychological) health than mothers of children with other disabilities (Laxman, 2015; Xu, 2014; Demir, 2008; Fairthorne, 2015a). However, largely these studies have made comparisons between a specific disability group (e.g. ASD) and a mixed ‘other’ disabilities group or a typically developing group (Bailey, 2007). Fewer studies have compared caregiver health across a number of specific diagnoses or compared specific diagnoses with children with potential disability e.g. developmental delay.

The common explanation for the greater ill-health observed in caregivers of children with ASD is comorbid behavioural problems (Stacey, 2009) - 53% of children with ASD were found to have 4 or more types of behavioural problems (in the areas of e.g. sleep, toileting, eating, hyperactivity, self-injury, aggression) (Maskey, 2013). Child behaviour is defined as problematic (or as a

37 disability) when it persists over time and “is of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion” (British Psychological Society, 2016, p. 8). Behavioural problems can be internalising (depression, anxiety) and externalising (aggression, defiance) (Ogundele, 2018).

Woodman et al. (2014b) identified child behavioural problems as a contributing factor in the increased risk of stress experienced by parents of children with any developmental disability compared with typically developing children; whilst Dumas et al. (1991) found that mother- caregivers of children with ASD or behavioural problems had clinically and statistically greater parenting stress than parents of children with Down syndrome or typical development. Behavioural problems have also been associated with increased caregiver fatigue (Seymour, 2013). However, it is important to note that behavioural problems are not only common in children with ASD. In general, behavioural problems are more common in disabled than typically developing children - preschool disabled children in England have a greater total number of behavioural problems, more serious and clinically significant problems that persist over time (Fauth, 2017). Children with developmental/intellectual disabilities may be up to four times more likely to have behavioural problems (Crnic, 2004).

Conversely, mothers of children with Down syndrome have the same or better health than caregivers of children with other disabilities and none (Griffith, 2010; Fairthorne, 2015a; Dumas, 1991). Initially an aetiological explanation was proposed, e.g. children with Down syndrome are more socially able and have fewer externalising behavioural problems than children with other learning disability aetiologies (Hodapp, 2001). However, it is more likely that socioeconomic status provides the explanation as parents of children with Down syndrome tend to be older and more affluent than parents of children with other learning disabilities (Section 1.4.3.2). Stoneman (2007) found that the so called ‘Down syndrome advantage’ disappeared when socioeconomic status was controlled for. She cautions that socioeconomic status must be considered in studies of the relationship between maternal health and child disability because it can be a predictor or a confounder.

1.4.3.3 Socioeconomic status

Caregivers are not a homogenous group, but are differentiated by sociodemographic contexts (Graham, 2009). It has been established that “health reflects the patterns of social, psychological and biological advantages and disadvantages experienced by the individual over time” (Bartley, 2004). Socioeconomic status is the single greatest predictor of individual health and well-being

38 (World Health Organization, 2003). It is a multidimensional concept of economic resources

(indicated by income, material deprivation, means-tested benefits) and social status (education, employment, ethnicity). These social determinants of health are responsible for health

inequalities (as modelled in Dahlgren and Whitehead’s rainbow model (Dahlgren, 1991)) - the differences in health status or in factors that determine health between different population groups (World Health Organization, 2017a). Thus, socioeconomically disadvantaged caregivers will be, on average, more likely to have ill-health than more advantaged caregivers.

1.4.3.4 Previous episodes of ill-health

An episode of ill-health increases the risk of a repeat episode. For example, a previous episode of depression greatly increases the risk of perinatal depression in women (Lancaster, 2010;

Gjerdingen, 1994), with recurrent episodes of depression usually occurring within five years of the first episode (Burcusa, 2007). A history of lower back pain is a predictor of lower back pain in caregivers of children with physical disabilities (Tong, 2003). Due to caregiver burden, caregivers may be at greater risk of repeat episodes than other mothers as stress and high stress life events (which could include adjusting to caregiving) are risk factors for recurrent depression and can increase the severity of other symptoms e.g. headaches (Demir, 2008; Wittrock, 1998; Cronkite, 2019).

There is also some evidence that caregivers of disabled children may have poorer health before (pre-natal) as well as after (post-natal) the child’s birth, including evidence for pre-existing psychological ill-health in mothers of children with ASD (Fairthorne, 2013; Vasa, 2012).

Explanations include the possibility of causal relationships between child ASD and maternal pre- natal medication use and lifestyle factors associated with psychological distress, or some shared genetic traits (Fairthorne, 2015b; Fairthorne, 2013; Brehaut, 2019a).