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Title: Who supports the families of black and minority ethnic children with life-limiting conditions?
Author: Kent, Wahida
ISNI:       0000 0004 9354 2844
Awarding Body: Cardiff University
Current Institution: Cardiff University
Date of Award: 2020
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This thesis is a study exploring the support systems of the families of Black and Minority Ethnic (BME) children with life-limiting conditions. Interviews were undertaken with twenty parent carers of BME children with life-limiting conditions, and ten practitioners working with the families of children with life-limiting conditions, in both Wales and England. The aim was to shed light on the lived experiences of this group of families, hitherto missing from the academic literature. This research has sought to address that gap, through interviews with parents BME children with life-limiting conditions. Interviews were also conducted with professionals working with families of children with life-limiting conditions. A mixed methods approach was adopted, which allowed for data from the Millennium Cohort Study, a nationally representative dataset, to also be utilised to look at the wider context of living with a disabled child. The research explored if there was ethnic variance in terms of the experiences of this group of families in accessing support, and identify potential barriers to both informal and formal support. And also, to ascertain if professionals working with them perceived their needs and experiences to be different from white families. The interviews with professionals help to ascertain how professionals perceive working with BME families, and whether they see ethnicity as impacting on the needs and experiences of this group of families. Findings from the research indicate that the families of BME children with life-limiting conditions face some similar challenges caring for their child and family, to those faced by white families. Religion and culture were not found to form a barrier to use of formal services. Those families accessing formal support overall found it helpful, and formed strong relationships with practitioners. However, it is the way they and their needs are perceived by some providers of formal support services which demonstrate that they are perceived as being different. This was found to be one of the barriers to this group of families accessing formal support. Some assumptions and beliefs around the needs of BME families appeared to be based on ‘racial’ and ethnic stereotypes and anecdotal evidence, which the qualitative and quantitative and findings of this research challenge. Recommendations from this research are for organisations working with BME families to ensure they are working in an anti-discriminatory manner by assessing the individual needs of that family. A shift away from what may be outdated ‘racial’ and ethnic stereotypes is needed.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: H Social Sciences (General)