Experiences and needs of carers of Aboriginal children with a disability: a qualitative study

BMC Family Practice

Research Article

Patrick Patradoon-Ho¹  Anna Green²  John Delaney²  Michelle DiGiacomo²  Patricia Delaney²  Patricia Mary Davidson³  Penelope Abbott⁴ 

[1] Blacktown and Mt Druitt Hospitals, Western Sydney Local Health District, Blacktown Road, 2148, Blacktown, NSW, Australia;Western Sydney University, Locked Bag 1797, 1797, Penrith, NSW, Australia;University of Technology Sydney, Faculty of Health, PO Box 123, Broadway, 2007, Sydney, NSW, Australia;University of Technology Sydney, Faculty of Health, PO Box 123, Broadway, 2007, Sydney, NSW, Australia;Johns Hopkins University, School of Nursing, 525 N. Wolfe Street, 21205, Baltimore, MD, USA;Western Sydney University, Locked Bag 1797, 1797, Penrith, NSW, Australia;

关键词: Caregivers;    Childhood disability;    Aboriginal and Torres Strait islander;    Indigenous;    Qualitative;   

DOI  :  10.1186/s12875-017-0668-3

 received in 2017-05-25, accepted in 2017-11-16,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundAustralian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face ‘double disadvantage’. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability.MethodsSemi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis.ResultsNineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers.ConclusionsTailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.

【 授权许可】

CC BY   
© The Author(s). 2017