Experiences of sleep as an occupation for parents of children with neurodevelopmental disabilities...RCOT (Royal College of Occupational Therapist) Annual Conference 2017

Research purpose and aim: Within practice, stakeholders report a high prevalence of sleep issues amongst children with disabilities. Sleep has featured historically as a 'Big Four Factor' of occupational balance (Meyer 1922, 1977, cited in Green 2008, p. 339). Due to a paucity of literature this new research explored experiences of sleep amongst parents of children with neurodevelopmental disabilities. Design and method: A systematic literature review was conducted, critically appraising 24 peer reviewed primary research studies from 1996 to 2011, which met inclusion criteria for key terms: sleep, parents and children with disabilities. This included motor or pervasive neurodevelopmental disorders, outcome measures or descriptions of parents' own and children's sleep related activity. RESULTS: Three themes emerged. The first identified characteristics of parents' own sleep and the second parents' experiences of their child's overnight function. The third established parents' experiences of their child's bedtime routine. Parents of children with motor-based conditions are vulnerable to losing occupational balance. Parents of children with pervasive conditions are at risk of disordered sleep quality. Conclusions and the impact for occupational therapy practice: Parental experiences of sleep have emerged as a mosaic, not a monotone. Given indications in this population of valuing of both parental sleep-related and over-night caring roles as well as risks of extreme parental stress related to child sleep patterns, practitioners must be aware that parents experience conflict with the utility and relevance of traditional sleep hygiene advice. Results newly underline that routine assessment of sleep-related need is required within practice.