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Research suggests that carers, most commonly mothers, of disabled children experience higher levels of stress, depression and physical health problems compared to carers of children without disabilities (e.g. Florian and Findler, 2001; Manuel et al., 2003). There is a vast and wide ranging literature on why caregivers of disabled children experience higher levels of stress and the impact this has on them. Many authors have attempted to conceptualise the burden of caregiving by applying existing models of stress or developing specific caregiving models. One model of stress that has been applied is Lazarus and Folkman’s classic process model of stress and coping (1984, cited in Beresford, 1994). This model places emphasis on the meaning that an event has for the individual and not just on the physiological responses and conceptualises stress as a process influenced by both external and internal factors. Raina et al. (2004) have developed a model more specific to the process of caregiving. This model incorporates 5 constructs which categorise separate factors influencing caregiver health. These constructs are background and context; child characteristics; caregiver strain; intrapsychic factors; and coping/supportive factors. These models are only useful to a certain extent as they fail to provide the details or to illustrate the complexity of caring for a child with a disability. Importantly what they fail to provide is a whole family perspective on experiences of stress as studies mainly focus only on the parents/carers and specifically on mothers. Fathers and siblings feature in very few studies (e.g. Herbert and Carpenter, 1999; Shulman, 1988; Dyson, 1996) and the perspective of the disabled child themselves, despite being the perceived cause of stress, is rarely considered.

How child sleeplessness potentially adds or contributes to the burden of care for parents of disabled children has been explored. Quine (1991) found

36 that sleep problems among disabled children were strongly associated with maternal stress. However, as Quine (1991) discusses the causal direction of this association is difficult to determine. Similarly, Richdale et al. (2000) found that the presence of a sleep problem was significantly associated both with behaviour problems in children and hassle (a measure of stress) frequency and intensity in their parents. Again, however, it is difficult to determine the direction of causality between child sleep problems, behaviour problems and parental stress.

The impact on caregivers (predominantly mothers) own sleep has also been explored. In a systematic review examining research specifically on parental sleep deprivation, and contributing factors, for parents caring for children with complex needs at home, 32 studies were identified that met the reviews eligibility criteria (McCann et al., 2015). Fifteen of these studies reported parental sleep timings including average night-time sleep length. A majority of these studies report comparatively low average sleep lengths (noted in the review as less than 7 hours per night; however it is not noted how this parameter was decided upon). There was an extensive variability in average sleep time observed within and between studies.

Meltzer et al. (2006) found that sleep disruption was common in mothers of children with chronic illness and that the mothers reported this as due to the stress related to their child’s ill-health. The study reported that caregiver sleep quality was found to mediate the relationship between child health and caregiver depression and fatigue. McCann et al. (2015) note that in a number of studies parents reported that their own (already disrupted) sleep patterns deteriorated when their child had periods of acute illness, therefore there were times of ‘acute lack of sleep [set] against a backdrop of chronic [and persistent]

sleep deprivation’ (McCann et al., 2015: 105).

In a qualitative study on the impact of caring for a child with cerebral palsy on the quality of life of their parents Davis et al. (2009) found that many parents experienced interrupted sleep generally because of their child’s dependence and need for physical care throughout the night and the resulting disrupted sleep impacted negatively on parents physical and emotional well

37 being (Davis et al., 2009). Furthermore, in a qualitative study conducted by Heaton et al. (2006) exploring the everyday routines associated with the care of technology-dependent children living at home, parental sleep disruption was experienced and mentioned by over half of the parents. Interestingly, in this study the majority of the children, when asked, did not appear to be as sleep disrupted as their parents. However, it is difficult to draw firm conclusions on this matter as sleep was not the primary focus of the study and, therefore, how much opportunity the children were given to explore their sleep experiences is unknown. For the parents in the Heaton et al. (2006) study the effects of sleep disruption were varied. A few parents reported no ill effects and felt that they had ‘normalised’ getting up during the night. However, other parents reported extreme tiredness and exhaustion and for a small number this affected their ability to take on paid employment and impacted on their social lives.

The need to be vigilant of their children with complex needs throughout the night was highlighted, along with night-time care, as the main contributing factor for parental sleep disturbance by a number of studies identified in the systematic review by McCann et al. (2015). Vigilance or parental surveillance at night was either due to a need to monitor their child’s health condition or their behaviour, or due to fear for their child’s safety, and was a commonly reported contributor to sleep disturbance in the included qualitative studies. Heaton et al.

(2006) discuss how one parent of a child dependent on technology stayed awake five nights per week to monitor her son in case his airway needed suctioning. Wright et al. (2006) mention the mother of a 17 year old boy with cerebral palsy who regularly monitored her son all night, because she had an overwhelming fear that he may vomit, choke and die.

Parallels between the research on sleep disruption and the contributing factors for parents caring at home for children with complex needs can be drawn with research on the effects on sleep of caring for older people (e.g.

partners, spouses or parents) with dementia or life threatening illnesses at home. For instance, Arber and Venn (2011) identify six different aspects of night-time care that impact negatively on the sleep of carers looking after their partners or older relatives with dementia or illnesses at home. These factors

38 include attending to the night-time physical needs of the person being cared for (e.g. personal care needs including toileting and cleaning after incidences of incontinence, medication administration, turning and repositioning in bed). If those being cared for are awake at night being disruptive, noisy or wandering out of bed (as can be the case for someone with dementia) then this would directly affect a carer’s sleep, as well as if the recipient of care experiences pain and requires comfort at night. Vigilance and monitoring during the night by the carer was also identified as a factor especially if the person being cared for was considered vulnerable, ‘at risk’ or in danger to themselves. Carers also experienced feelings of anticipation of their care being required so would often stay up later in readiness or reported having ‘alert, light sleep’ (p6). Arber and Venn (2011) also identify the ‘emotional support’ that carers provide at night whereby their sleep is disrupted by worries related to their caregiving. A final reason identified is labelled as the ‘legacy of caregiving’ whereby a carer’s sleep continues to be disrupted even after caring ceases because of distressing images and memories of their loved one’s illness and suffering. All of these factors, apart from the last one, have been raised as contributing factors related to the sleep disruption of parents caring for children with complex needs at home (McCann et al., 2015). An added issue for parents of children with complex needs is the persistent and long lasting nature of their care work.

Children with complex disabilities and needs may remain in the family home right up to and throughout adulthood. As mentioned above the sleep disturbance and factors that cause sleep issues in children with complex needs are persistent, therefore it is easy to assume that the resulting sleep disruption for parents is also long-lasting.

Caution is still needed in assuming that child sleep problems automatically equate to parental stress or increased burden of care. Caution is also needed in considering how a parents’ own sleep disruption, as a consequence of caring, is perceived and experienced. Where associations and contributing factors, as identified above, are present consideration is required of the complexity and likelihood that associations are mediated by a large number of different variables which may be individual to the multiple family members and to the family as a unit. As Wiggs (2007) makes clear there is no

39 consideration in many studies focussing on the association between child sleeplessness and parental burden of care ‘…of the interaction between a child’s sleep pattern and the parents’ beliefs, expectations, values and resources’ (para. 2.6). Similarities and differences between family member’s definitions of ‘good sleep’ and definitions of ‘poor sleep’ will exist just as they will exist between families. It is these narratives and the socio-cultural context they are embedded in that have not, to date, been explored. An exploration of the meanings behind such definitions may provide answers as to why some families are more severely impacted on by perceived sleeplessness compared to others. With specific reference to the resources utilised by families (as mentioned by Wiggs, 2007), Beresford (1994) comments that it is important to move away from describing all the particular stressors (of which sleep disruption may be one) and their adverse effects. Instead an exploration of the ways in which families cope with varying degrees of success should take place as this would have ‘…far greater implications for the understanding and improving the ways that these families can be helped’ (Beresford, 1994: 171).