Scottish Longitudinal Study
Development & Support Unit
The impact on parental mortality of caregiving for a child with a chronic illness
Eileen Calveley (University of Stirling)
Gerard Molloy (University of Stirling)
Approved on 22-05-2012
This project will aim to investigate whether: caregiving for a chronically ill child increases the risk of poor self-reported health and mortality for the parent; whether caregiving for a chronically ill child has an impact on relationship breakdown; and whether relationship breakdown mediates the risk of mortality. It is hypothesised that there will be a difference between caregiving mothers and mothers of healthy children in: self-reported health; the mortality risk; rate of relationship breakdown; and that any relationship between caregiving and mortality risk will be mediated by relationship breakdown.
The cost to the caregiver’s health of caring for an adult with a chronic illness, such as dementia, has been well-established, with a range of studies pointing towards impacts of chronic stress on the immune system and an increased risk of morbidity and earlier mortality (Schulz and Beach, 1999). As a result, there has been a strong focus on providing support for spousal carers, for example. Caring for a child is generally seen as part of the natural process of becoming a parent, however, and this may be one reason why there are fewer studies on the impact of caring for a child with developmental disabilities or other chronic illnesses which may place a burden of care on the parents which is far beyond what would normally be expected. Some recent studies have shown higher levels of depression and anxiety in parent caregivers of children with cerebral palsy (Cheshire et al, 2010), factors which have been associated with increased morbidity and mortality in spousal caregivers. A further study found that a significant proportion of parents of a chronically ill child had lower health-related quality of life (Hatzmann et al, 2008) and factors which have been found to be directly and/or indirectly linked to this are caregiving demands and family functioning, particularly the quality of marital relationships (Raina et al, 2005). Longitudinal research has found that parents who have experienced stillbirth or the death of a child in its first year have a significantly higher mortality risk than non-bereaved parents (Harper, O’Connor and O’Carroll, 2011). There is, however, little evidence on whether caring for a child with chronic illness is linked with an increased risk of early mortality in the parent carer and this will be the aim of this study.
Cheshire, A., Barlow, J and Powell, L. The psychosocial well-being of parents of children with cerebral palsy: a comparison study, Disability and Rehabilitation, Vol. 32 (20), pp. 1673-1677
Harper, M., O'Connor, R. and O'Carroll, R, 2011, Increased mortality in parents bereaved in the first year of their child's life. BMJ Supportive and Palliative Care, Vol. 1, pp. 306-309
Hatzmann, J., Heymans, H., Ferrer-i-Carbonell, A., van Praag, B. and Grootenhuis, M. (2008), Hidden Consequences of Success in Pediatrics: Parental health-related quality of life - Results from the Care Project. Pediatrics, Vol. 122(5), pp. 1030-1038
Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S., Russell, D., Swinton, M., Zhu, B. and Wood, E. (2005), The health and well-being of caregivers of children with cerebral palsy. Pediatrics, Vol. 115(6), pp. 626-636.
Schulz, R & Beach, S. (1999) Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study, JAMA. Vol. 282(23), pp. 2215-2219.
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