Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings has not yet been described or documented. Eight siblings participated in the research. The data indicated four key themes which demonstrate impact on siblings. perception of the condition and symptoms, impact on daily life emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. There was also a protecting of parents from an awareness of how much they knew, and an impact on relationships at school - being bullied by peers. The authors recommend the focus of intervention to support this group should address their emotional health and ways to overcome isolation and build connection with other siblings who share their unique experiences.
Malcolm, C., Gibson, F., Adams, S., Anderson, G. & Forbat, L. 2014. A relational understanding of sibling experiences of children with rare life-limiting conditions: a qualitative study. Journal of Child Health Care 18 (3) p 230-240
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