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A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study.

Malcolm, C, Gibson, F, Adams, S, Anderson, G and Forbat, L (2014) A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. J Child Health Care, 18 (3). pp. 230-240.

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Abstract

Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) 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. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its 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. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother's or sister's condition and the emotional sequelae of disease progression. Exploration of siblings' experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.

Item Type: Article
Subjects : Biosciences
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
AuthorsEmailORCID
Malcolm, CUNSPECIFIEDUNSPECIFIED
Gibson, FUNSPECIFIEDUNSPECIFIED
Adams, SUNSPECIFIEDUNSPECIFIED
Anderson, GUNSPECIFIEDUNSPECIFIED
Forbat, LUNSPECIFIEDUNSPECIFIED
Date : September 2014
Identification Number : 10.1177/1367493513485825
Copyright Disclaimer : Copyright 2014 Sage Publications
Uncontrolled Keywords : Palliative care, qualitative approaches, sibling(s), Adaptation, Psychological, Child, Emotions, Female, Great Britain, Humans, Interviews as Topic, Male, Mucopolysaccharidoses, Neuronal Ceroid-Lipofuscinoses, Palliative Care, Qualitative Research, Rare Diseases, Sibling Relations, Siblings
Related URLs :
Additional Information : Full text not available from this repository.
Depositing User : Symplectic Elements
Date Deposited : 07 Jun 2016 13:53
Last Modified : 07 Jun 2016 13:53
URI: http://epubs.surrey.ac.uk/id/eprint/810949

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