Tags

Type your tag names separated by a space and hit enter

A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study.
J Child Health Care 2014; 18(3):230-40JC

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.

Authors+Show Affiliations

School of Nursing, Midwifery and Health, University of Stirling, UK cari.malcolm@stir.ac.uk.Great Ormond Street Hospital and London South Bank University, UK.School of Nursing, Midwifery and Health, University of Stirling, UKGreat Ormond Street Hospital and London South Bank University, UKCancer Care Research Centre (CCRC), School of Nursing, Midwifery and Health, University of Stirling, UK.School of Nursing, Midwifery and Health, University of Stirling, UKGreat Ormond Street Hospital and London South Bank University, UKCancer Care Research Centre (CCRC), School of Nursing, Midwifery and Health, University of Stirling, UK.Cancer Care Research Centre (CCRC), School of Nursing, Midwifery and Health, University of Stirling, UK.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

23754839

Citation

Malcolm, Cari, et al. "A Relational Understanding of Sibling Experiences of Children With Rare Life-limiting Conditions: Findings From a Qualitative Study." Journal of Child Health Care : for Professionals Working With Children in the Hospital and Community, vol. 18, no. 3, 2014, pp. 230-40.
Malcolm C, Gibson F, Adams S, et al. A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. J Child Health Care. 2014;18(3):230-40.
Malcolm, C., Gibson, F., Adams, S., Anderson, G., & Forbat, L. (2014). A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. Journal of Child Health Care : for Professionals Working With Children in the Hospital and Community, 18(3), pp. 230-40. doi:10.1177/1367493513485825.
Malcolm C, et al. A Relational Understanding of Sibling Experiences of Children With Rare Life-limiting Conditions: Findings From a Qualitative Study. J Child Health Care. 2014;18(3):230-40. PubMed PMID: 23754839.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. AU - Malcolm,Cari, AU - Gibson,Faith, AU - Adams,Sally, AU - Anderson,Gillian, AU - Forbat,Liz, Y1 - 2013/06/10/ PY - 2013/6/12/entrez PY - 2013/6/12/pubmed PY - 2016/2/2/medline KW - Palliative care KW - qualitative approaches KW - sibling(s) SP - 230 EP - 40 JF - Journal of child health care : for professionals working with children in the hospital and community JO - J Child Health Care VL - 18 IS - 3 N2 - 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. SN - 1741-2889 UR - https://www.unboundmedicine.com/medline/citation/23754839/A_relational_understanding_of_sibling_experiences_of_children_with_rare_life_limiting_conditions:_findings_from_a_qualitative_study_ L2 - http://journals.sagepub.com/doi/full/10.1177/1367493513485825?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub=pubmed DB - PRIME DP - Unbound Medicine ER -