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Chapter 34. The impact on support and care teams for people with multiple disabilities

In: Philippe Camberlein ed, La personne polyhandicapée.

Paris, Dunod, “Guides Santé Social”, 2017, p. 613-628. DOI: 10.3917/dunod.ponso.2017.01.0613

Rousseau, M. & Coiffard, J.

Chapter 34. The impact on support and care teams for people with multiple disabilities

Psychic distress, stress, burnout and deterioration in quality of life at work have been described among caregivers working in very different areas of care: in intensive care units (Bellagamba et al., 2015), oncology (Ko and Kiser-Larson, 2016), Alzheimer’s units (Hazelhof et al., 2016), obstetrics (Nowrouzi et al., 2015), neonatology (Herrero Sanz et al., 2012), mental health and general medicine (J. Jones et al., 1987; Lu, While, and Barriball, 2005). There are also a few studies focusing on caregivers working in facilities for patients with intellectual disabilities (Skirrow and Hatton 2007; Whittingham et al., 2014; Lin, Wu, and Lin, 2015). Finally, we find studies focusing on caregivers looking after patients with characteristics in common with patients with multiple disabilities: for example, it has been shown that pediatric nurses looking after children in a persistent vegetative state suffered from emotional distress (Montagnino and Ethier, 2007), and psychiatric nurses showed a deterioration in their psychic quality of life (Shiao et al., 2010; Sorić et al., 2013).
Several studies have also been carried out on caregivers of cerebral palsy patients focusing on quality of life, stress, depression (Emerson 2003; Majnemer et al., 2012). Despite an extensive literature on both informal and professional caregivers, no study has yet explored the specific field of multiple disabilities and their repercussions on caregivers’ quality of life…