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

Article


DiGiacomo, Michelle, Green, Anna, Delaney, Patricia, Delaney, John, Patradoon-Ho, Patrick, Davidson, Patricia Mary and Abbott, Penelope. 2017. "Experiences and needs of carers of Aboriginal children with a disability: a qualitative study." BMC Family Practice. 18 (1), pp. 1-11. https://doi.org/10.1186/s12875-017-0668-3
Article Title

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

ERA Journal ID13443
Article CategoryArticle
AuthorsDiGiacomo, Michelle (Author), Green, Anna (Author), Delaney, Patricia (Author), Delaney, John (Author), Patradoon-Ho, Patrick (Author), Davidson, Patricia Mary (Author) and Abbott, Penelope (Author)
Journal TitleBMC Family Practice
Journal Citation18 (1), pp. 1-11
Article Number96
Number of Pages11
Year2017
PublisherBioMed Central Ltd.
Place of PublicationUnited Kingdom
ISSN1471-2296
Digital Object Identifier (DOI)https://doi.org/10.1186/s12875-017-0668-3
Web Address (URL)https://bmcprimcare.biomedcentral.com/articles/10.1186/s12875-017-0668-3
Abstract

Background: Australian 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. Methods: Semi-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. Results: Nineteen 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. Conclusions: Tailoring 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.

KeywordsAboriginal and Torres Strait islander; Caregivers; Childhood disability; Indigenous; Qualitative
ANZSRC Field of Research 2020420305. Health and community services
Byline AffiliationsUniversity of Technology Sydney
Western Sydney Local Health District, Australia
Western Sydney University
Institution of OriginUniversity of Southern Queensland
Permalink -

https://research.usq.edu.au/item/q77x6/experiences-and-needs-of-carers-of-aboriginal-children-with-a-disability-a-qualitative-study

Download files


Published Version
DiGiacomo et al 2017.pdf
License: CC BY 4.0
File access level: Anyone

  • 41
    total views
  • 25
    total downloads
  • 0
    views this month
  • 0
    downloads this month

Export as

Related outputs

Supportive interventions for carers of men with prostate cancer: systematic review and narrative synthesis
Winter, Natalie, Jongebloed, Hannah, Green, Anna, Ugalde, Anna and Livingston, Patricia M. 2024. "Supportive interventions for carers of men with prostate cancer: systematic review and narrative synthesis." BMJ Supportive and Palliative Care. 14 (1), pp. e173-e182. https://doi.org/10.1136/spcare-2022-004034
Prostate Cancer Survivorship Essentials for men with prostate cancer on androgen deprivation therapy: protocol of an effectiveness-implementation hybrid (Type 1) randomised trial of a tele-based nurse-led survivorship care intervention (PCEssentials)
Green, Anna, Newton, Robert U, Chambers, Suzanne K, Smith, David P, Tuffaha, Haitham, Galvao, Daniel A, Heathcote, Peter, Patel, Manish I, Christie, David, Egger, Sam, Sara, Sally, Heneka, Nicole and Dunn, Jeff. 2023. "Prostate Cancer Survivorship Essentials for men with prostate cancer on androgen deprivation therapy: protocol of an effectiveness-implementation hybrid (Type 1) randomised trial of a tele-based nurse-led survivorship care intervention (PCEssentials)." ANZUP Annual Scientific Meeting. Melbourne, Australia 09 - 11 Jul 2023
The importance of developing palliative care quality indicators for the prison setting: why now, and next steps
Schaefer, Isabelle, Heneka, Nicole, DiGiacomo, Michelle, Panozzo, Stacey and Phillips, Jane L.. 2023. "The importance of developing palliative care quality indicators for the prison setting: why now, and next steps." BMC Palliative Care. 22 (1). https://doi.org/10.1186/s12904-023-01150-3
Correction: The importance of developing palliative care quality indicators for the prison setting: why now, and next steps
Schaefer, Isabelle, Heneka, Nicole, DiGiacomo, Michelle, Panozzo, Stacey and Phillips, Jane L.. 2023. "Correction: The importance of developing palliative care quality indicators for the prison setting: why now, and next steps ." BMC Palliative Care. 22 (1). https://doi.org/10.1186/s12904-023-01210-8
Understanding the gendered experiences of female partners of prostate cancer survivors to inform psychosocial support: a systematic review and thematic synthesis
Green, Anna, Winter, Natalie, DiGiacomo, Michelle, Oliffe, John L., Ralph, Nicholas, Dunn, Jeff and Chambers, Suzanne K.. 2022. "Understanding the gendered experiences of female partners of prostate cancer survivors to inform psychosocial support: a systematic review and thematic synthesis." 2022 IPOS World Congress. Toronto, Canada 29 Aug - 01 Sep 2022 United States.
Experiences of female partners of prostate cancer survivors: A systematic review and thematic synthesis
Green, Anna, Winter, Natalie, DiGiacomo, Michelle, Oliffe, John L., Ralph, Nicholas, Dunn, Jeff and Chambers, Suzanne K.. 2022. "Experiences of female partners of prostate cancer survivors: A systematic review and thematic synthesis." Health and Social Care in the Community. 30 (4), pp. 1213-1232. https://doi.org/10.1111/hsc.13644
Designing Supportive e-Interventions for Partners of Men With Prostate Cancer Using Female Partners’ Experiences: Qualitative Exploration Study
Winter, Natalie, Green, Anna, Jongebloed, Hannah, Ralph, Nicholas, Chambers, Suzanne and Livingston, Patricia. 2022. "Designing Supportive e-Interventions for Partners of Men With Prostate Cancer Using Female Partners’ Experiences: Qualitative Exploration Study." JMIR Cancer. 8 (1), pp. 1-12. https://doi.org/10.2196/31218
Cross-sector collaborations in Aboriginal and Torres Strait Islander childhood disability: a systematic integrative review and theory-based synthesis
Green, Anna, DiGiacomo, Michelle, Luckett, Tim, Abbott, Penelope, Davidson, Patricia Mary, Delaney, Joanne and Delaney, Patricia. 2014. "Cross-sector collaborations in Aboriginal and Torres Strait Islander childhood disability: a systematic integrative review and theory-based synthesis." International Journal for Equity in Health. 13, pp. 1-16. https://doi.org/10.1186/s12939-014-0126-y
Australian Survey of Current Practice and Guideline Use in Adult Cancer Pain Assessment and Management: Perspectives of Palliative Care Physicians
Lovell, Melanie, Agar, Meera, Luckett, Tim, Davidson, Patricia M., Green, Anna and Clayton, Josephine. 2013. "Australian Survey of Current Practice and Guideline Use in Adult Cancer Pain Assessment and Management: Perspectives of Palliative Care Physicians." Journal of Palliative Medicine. 16 (11), pp. 1403-1409. https://doi.org/10.1089/jpm.2013.0245
Australian survey of current practice and guideline use in adult cancer pain assessment and management: Perspectives of oncologists
Luckett, Tim, Davidson, Patricia Mary, Boyle, Frances, Liauw, Winston, Agar, Meera, Green, Anna and Lovell, Melanie. 2014. "Australian survey of current practice and guideline use in adult cancer pain assessment and management: Perspectives of oncologists." Asia Pacific Journal of Clinical Oncology. 10 (2), pp. e99-e107. https://doi.org/10.1111/ajco.12040
Assessment and Management of Adult Cancer Pain: A Systematic Review and Synthesis of Recent Qualitative Studies Aimed at Developing Insights for Managing Barriers and Optimizing Facilitators Within a Comprehensive Framework of Patient Care
Luckett, Tim, Davidson, Patricia M., Green, Anna, Boyle, Frances, Stubbs, John and Lovell, Melanie. 2013. "Assessment and Management of Adult Cancer Pain: A Systematic Review and Synthesis of Recent Qualitative Studies Aimed at Developing Insights for Managing Barriers and Optimizing Facilitators Within a Comprehensive Framework of Patient Care." Journal of Pain and Symptom Management. 46 (2), pp. 229-253. https://doi.org/10.1016/j.jpainsymman.2012.07.021
Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review
Hosie, Annmarie, Kochovska, Slavica, Ries, Nola, Gilmore, Imelda, Parker, Deborah, Sinclair, Craig, Sheehan, Caitlin, Collier, Aileen, Caplan, Gideon A., Visser, Mandy, Xu, Xiaoyue, Lobb, Elizabeth, Sheahan, Linda, Brown, Linda, Lee, Wei, Sanderson, Christine R., Amgarth-Duff, Ingrid, Green, Anna, Edwards, Layla and Agar, Meera R.. 2022. "Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review." The Gerontologist. 62 (2), pp. e112-e122. https://doi.org/10.1093/geront/gnaa118
Experience of Advanced Chronic Obstructive Pulmonary Disease: Metasynthesis of Qualitative Research
Disler, Rebecca T., Green, Anna, Luckett, Tim, Newton, Phillip J., Inglis, Sally, Currow, David C. and Davidson, Patricia M.. 2014. "Experience of Advanced Chronic Obstructive Pulmonary Disease: Metasynthesis of Qualitative Research." Journal of Pain and Symptom Management. 48 (6), pp. 1182-1199. https://doi.org/10.1016/j.jpainsymman.2014.03.009
Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach
Virdun, Claudia, Brown, Nicola, Phillips, Jane, Luckett, Tim, Agar, Meera, Green, Anna and Davidson, Patricia M.. 2015. "Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach." Collegian: The Australian Journal of Nursing Practice, Scholarship and Research. 22 (4), pp. 421-431. https://doi.org/10.1016/j.colegn.2014.07.001
Elements of effective palliative care models: a rapid review
Luckett, Tim, Phillips, Jane, Agar, Meera, Virdun, Claudia, Green, Anna and Davidson, Patricia M.. 2014. "Elements of effective palliative care models: a rapid review." BMC Health Services Research. 14, pp. 1-22. https://doi.org/10.1186/1472-6963-14-136
Developing a gender-based approach to chronic conditions and women’s health: a qualitative investigation of community-dwelling women and service provider perspectives
DiGiacomo, Michelle, Green, Anna, Rodrigues, Emma, Mulligan, Kathryn and Davidson, Patricia M.. 2015. "Developing a gender-based approach to chronic conditions and women’s health: a qualitative investigation of community-dwelling women and service provider perspectives." BMC Women's Health. 15, pp. 1-11. https://doi.org/10.1186/s12905-015-0264-4
Spiritual and religious interventions in health care: An integrative review
Hosseini, Mohammadali Hosseini, Davidson, Patricia Mary, Khoshknab, Masoud Fallahi and Green, Anna. 2013. "Spiritual and religious interventions in health care: An integrative review." Iranian Rehabilitation Journal. 11 (2), pp. 87-93.
Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services
Green, Anna, Abbott, Penelope, Delaney, Patricia, Patradoon-Ho, Patrick, Delaney, John, Davidson, Patricia Mary and DiGiacomo, Michelle. 2016. "Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services." BMC Health Services Research. 16 (1), pp. 1-11. https://doi.org/10.1186/s12913-016-1926-0
A Multicomponent Nonpharmacological Intervention to Prevent Delirium for Hospitalized People with Advanced Cancer: A Phase II Cluster Randomized Waitlist Controlled Trial (The PRESERVE Pilot Study)
Hosie, Annmarie, Phillips, Jane, Lam, Lawrence, Kochovska, Slavica, Noble, Beverly, Brassil, Meg, Kurrle, Susan, Cumming, Anne, Caplan, Gideon A., Chye, Richard, Ely, Eugene Wesley, Lawlor, Peter G., Bush, Shirley H., Davis, Jan Maree, Lovell, Melanie, Parr, Cynthia, Williams, Sally, Hauser, Katherine, McArdle, Susan, ..., Agar, Meera. 2020. "A Multicomponent Nonpharmacological Intervention to Prevent Delirium for Hospitalized People with Advanced Cancer: A Phase II Cluster Randomized Waitlist Controlled Trial (The PRESERVE Pilot Study)." Journal of Palliative Medicine. 23 (10), pp. 1314-1322. https://doi.org/10.1089/jpm.2019.0632
Interacting With Providers: An Intersectional Exploration of the Experiences of Carers of Aboriginal Children With a Disability
Green, Anna, Abbott, Penelope, Davidson, Patricia Mary, Delaney, Patricia, Delaney, John, Patradoon-Ho, Patrick and DiGiacomo, Michelle. 2018. "Interacting With Providers: An Intersectional Exploration of the Experiences of Carers of Aboriginal Children With a Disability." Qualitative Health Research. 28 (12), pp. 1923-1932. https://doi.org/10.1177/1049732318793416
Health and Socio-Cultural Experiences of Refugee Women: An Integrative Review
Shishehgar, Sara, Gholizadeh, Leila, DiGiacomo, Michelle, Green, Anna and Davidson, Patricia M.. 2017. "Health and Socio-Cultural Experiences of Refugee Women: An Integrative Review." Journal of Immigrant and Minority Health. 19 (4), pp. 959-973. https://doi.org/10.1007/s10903-016-0379-1
A framework for an asset-informed approach to service mapping
Green, Anna, Luckett, Tim, Abbott, Penelope, DiGiacomo, Michelle, Delaney, John, Delaney, Patricia and Davidson, Patricia Mary. 2017. "A framework for an asset-informed approach to service mapping." Nurse Researcher. 25 (3), pp. 19-25. https://doi.org/10.7748/nr.2017.e1479
Development of a cancer pain self-management resource to address patient, provider, and health system barriers to care
Luckett, Tim, Davidson, Patricia M., Green, Anna, Marie, Natalie, Birch, Mary-Rose, Stubbs, John, Phillips, Jane, Agar, Meera, Boyle, Frances and Lovell, Melanie. 2019. "Development of a cancer pain self-management resource to address patient, provider, and health system barriers to care." Palliative and Supportive Care. 17 (4), pp. 472-478. https://doi.org/10.1017/S1478951518000792
‘Death is difficult in any language’: A qualitative study of palliative care professionals’ experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds
Green, Anna, Jerzmanowska, Natalia, Green, Marguerite and Lobb, Elizabeth A.. 2018. "‘Death is difficult in any language’: A qualitative study of palliative care professionals’ experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds." Palliative Medicine. 32 (8), pp. 1419-1427. https://doi.org/10.1177/0269216318776850
Culturally and linguistically diverse palliative care patients’ journeys at the end-of-life
Green, Anna, Jerzmanowska, Natalie, Thristiawati, Safrina, Green, Marguerite and Lobb, Elizabeth A.. 2019. "Culturally and linguistically diverse palliative care patients’ journeys at the end-of-life." Palliative and Supportive Care. 17 (2), pp. 227-233. https://doi.org/10.1017/S1478951518000147
Prostate cancer survivorship essentials framework: guidelines for practitioners
Dunn, Jeff, Green, Anna, Ralph, Nicholas, Newton, Robert U., Kneebone, Andrew, Frydenberg, Mark and Chambers, Suzanne K.. 2021. "Prostate cancer survivorship essentials framework: guidelines for practitioners." BJU International. 128 (S3), pp. 18-29. https://doi.org/10.1111/bju.15159
Collaborating across sectors to provide early intervention for Aboriginal and Torres Strait Islander children with disability and their families: a qualitative study of provider perspectives
Green, Anna, Abbott, Penelope, Luckett, Tim, Davidson, Patricia Mary, Delaney, John, Delaney, Patricia, Gunasekera, Hasantha and DiGiacomo, Michelle. 2020. "Collaborating across sectors to provide early intervention for Aboriginal and Torres Strait Islander children with disability and their families: a qualitative study of provider perspectives." Journal of Interprofessional Care. 34 (3), pp. 388-399. https://doi.org/10.1080/13561820.2019.1692798
Unmet Needs in Chronic Obstructive Pulmonary Disease: A Metasynthesis Protocol
Disler, Rebecca T., Green, Anna, Luckett, Tim, Newton, Phillip J., Inglis, Sally C., Currow, David C. and Davidson, Patricia M.. 2012. "Unmet Needs in Chronic Obstructive Pulmonary Disease: A Metasynthesis Protocol." International Journal of Research in Nursing. 3 (1), pp. 15-20. https://doi.org/10.3844/ijrnsp.2012.15.20
'It’s quite a complex trail for families now'– Provider understanding of access to services for Aboriginal children with a disability
Green, Anna, Abbott, Penelope, Luckett, Tim, Davidson, Patricia Mary, Delaney, John, Delaney, Patricia, Gunasekera, Hasantha and DiGiacomo, Michelle. 2021. "'It’s quite a complex trail for families now'– Provider understanding of access to services for Aboriginal children with a disability." Journal of Child Health Care. 25 (2), pp. 194-211. https://doi.org/10.1177/1367493520919305
Contemporary consumer perspectives on prostate cancer survivorship: Fifty voices
Dunn, Jeff, Ralph, Nicholas, Green, Anna, Frydenberg, Mark and Chambers, Suzanne. 2020. "Contemporary consumer perspectives on prostate cancer survivorship: Fifty voices." Psycho-Oncology: journal of the psychological, social and behavioral dimensions of cancer. 29 (3), pp. 557-563. https://doi.org/10.1002/pon.5306
Prostate cancer survivorship priorities for men and their partners: Delphi consensus from a nurse specialist cohort
Ralph, Nicholas, Green, Anna, Sara, Sally, McDonald, Suzanne, Norris, Philip, Terry, Victoria, Dunn, Jeffrey C. and Chambers, Suzanne K.. 2020. "Prostate cancer survivorship priorities for men and their partners: Delphi consensus from a nurse specialist cohort." Journal of Clinical Nursing. 29 (1-2), pp. 265-273. https://doi.org/10.1111/jocn.15096
A psychosocial care model for men with prostate cancer
Chambers, Suzanne K., Galvao, Daniel A., Green, Anna, Lazenby, Mark, Newton, Robert U., Oliffe, John L., Phillips, Jane L., Phillips, Rachel, Ralph, Nicholas, Sara, Sally, Heathcote, Peter and Dunn, Jeff. 2019. A psychosocial care model for men with prostate cancer. Sydney, Australia. Prostate Cancer Foundation of Australia.
A phase III wait-listed randomised controlled trial of novel targeted interprofessional clinical education intervention to improve cancer patients’ reported pain outcomes (The Cancer Pain Assessment (CPAS) Trial): study protocol
Phillips, Jane L., Heneka, Nicole, Lovell, Melanie, Lam, Lawrence, Davidson, Patricia, Boyle, Frances, McCaffrey, Nikki, Fielding, Sally and Shaw, Tim. 2019. "A phase III wait-listed randomised controlled trial of novel targeted interprofessional clinical education intervention to improve cancer patients’ reported pain outcomes (The Cancer Pain Assessment (CPAS) Trial): study protocol." Trials. 20. https://doi.org/10.1186/s13063-018-3152-z
The role of trait emotional intelligence in academic performance during the university transition: an integrative model of mediation via social support, coping, and adjustment
Perera, Harsha N. and DiGiacomo, Michelle. 2015. "The role of trait emotional intelligence in academic performance during the university transition: an integrative model of mediation via social support, coping, and adjustment." Personality and Individual Differences. 83, pp. 208-213. https://doi.org/10.1016/j.paid.2015.04.001
Australian survey of current practice and guideline use in adult cancer pain assessment and management: The community nurse perspective
Phillips, Jane L., Lovell, Melanie, Luckett, Tim, Agar, Meera, Green, Anna and Davidson, Patricia. 2015. "Australian survey of current practice and guideline use in adult cancer pain assessment and management: The community nurse perspective." Collegian: The Australian Journal of Nursing Practice, Scholarship and Research. 22 (1), pp. 33-41. https://doi.org/10.1016/j.colegn.2013.11.002
The relationship of trait emotional intelligence with academic performance: a meta-analytic review
Perera, Harsha N. and DiGiacomo, Michelle. 2013. "The relationship of trait emotional intelligence with academic performance: a meta-analytic review." Learning and Individual Differences: journal of psychology and education. 28, pp. 20-33. https://doi.org/10.1016/j.lindif.2013.08.002