Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services

Article


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
Article Title

Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services

ERA Journal ID13444
Article CategoryArticle
AuthorsGreen, Anna (Author), Abbott, Penelope (Author), Delaney, Patricia (Author), Patradoon-Ho, Patrick (Author), Delaney, John (Author), Davidson, Patricia Mary (Author) and DiGiacomo, Michelle (Author)
Journal TitleBMC Health Services Research
Journal Citation16 (1), pp. 1-11
Article Number680
Number of Pages11
Year2016
PublisherBioMed Central Ltd.
Place of PublicationUnited Kingdom
ISSN1472-6963
Digital Object Identifier (DOI)https://doi.org/10.1186/s12913-016-1926-0
Web Address (URL)https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-016-1926-0
Abstract

Background: The disadvantage experienced by Aboriginal and Torres Strait Islander children with a disability is well recognized. The long term consequences of failing to address disability on health, education and employment underlies the importance of early intervention. Caregivers experience a disproportionate burden and have challenges accessing services. The aim of this study was to describe the carer journey of accessing support and services. Methods: We conducted in-depth semi-structured interviews with nineteen parents and carers of Aboriginal children aged 0-8 years. The children were patients at a child developmental clinic at a metropolitan area Aboriginal health service in Eastern Australia. Interpretive phenomenological analysis was applied to transcribed verbatim accounts. Results: Four themes were developed using the 'journey' metaphor to describe the carer pathway of accessing support and services at the community, service and policy levels. Themes included 1) the need for increased signage within communities via community education, information and awareness, 2) wrong way signs, roundabouts and roadblocks encountered when accessing services, 3) alternate routes can facilitate the journey, and 4) incompatibility of inflexible bureaucratic road rules and lived realities. Conclusions: The challenges of caring for a child with a disability are indisputable and these can be compounded for people experiencing socio-economic disadvantage and marginalisation. Overcoming challenges to service access faced by carers of Aboriginal children with a disability will require investment in community, services and policy to tailor culturally appropriate models of care.

KeywordsAboriginal and Torres Strait Islander; Carer; Childhood; Disability; Service pathway
ANZSRC Field of Research 2020420305. Health and community services
Byline AffiliationsUniversity of Technology Sydney
Western Sydney University
Institution of OriginUniversity of Southern Queensland
Permalink -

https://research.usq.edu.au/item/q77xx/navigating-the-journey-of-aboriginal-childhood-disability-a-qualitative-study-of-carers-interface-with-services

Download files


Published Version
Green et al 2016.pdf
License: CC BY 4.0
File access level: Anyone

  • 66
    total views
  • 44
    total downloads
  • 0
    views this month
  • 0
    downloads this month

Export as

Related outputs

“They feel shame sometime, but that is why we need to talk to them…we need to tell them how important it is not to feel shame”: Hepatitis B related shame and improving hepatitis B care in Aboriginal and Torres Strait Islander communities in the Top End of the Northern Territory, according to the Aboriginal health workforce
Sullivan, Richard P., Bukulatjpi, Sarah Mariyalawuy, Binks, Paula, Hosking, Kelly, Nundhirribala, Patricia, Vintour-Cesar, Emily, McKinnon, Melita, Gurruwiwi, George, Green, Anna, Davis, Joshua S. and Davies, Jane. 2024. "“They feel shame sometime, but that is why we need to talk to them…we need to tell them how important it is not to feel shame”: Hepatitis B related shame and improving hepatitis B care in Aboriginal and Torres Strait Islander communities in the Top End of the Northern Territory, according to the Aboriginal health workforce." Archives of Public Health. 82 (1). https://doi.org/10.1186/s13690-024-01389-z
Perceptions and experiences of clinicians and correctional officers facilitating palliative care for people in prison: A systematic review and meta-synthesis
Schaefer, Isabelle, Panozzo, Stacey, DiGiacomo, Michelle, Heneka, Nicole and Phillips, Jane L.. 2024. "Perceptions and experiences of clinicians and correctional officers facilitating palliative care for people in prison: A systematic review and meta-synthesis." Palliative Medicine. 38 (9), pp. 951-967. https://doi.org/10.1177/02692163241262614
Effectiveness of educational and psychological survivorship interventions to improve health-related quality of life outcomes for men with prostate cancer on androgen deprivation therapy: A systematic review
Sara, Sally AM, Heneka, Nicole, Green, Anna, Chambers, Suzanne K, Dunn, Jeff and Terry, Victoria R. 2024. "Effectiveness of educational and psychological survivorship interventions to improve health-related quality of life outcomes for men with prostate cancer on androgen deprivation therapy: A systematic review." BMJ Open. 14 (5). https://doi.org/10.1136/bmjopen-2023-080310
Prostate Cancer Survivorship Essentials for men with prostate cancer on androgen deprivation therapy: protocol for a randomised controlled trial of a tele-based nurse-led survivorship care intervention (PCEssentials Hormone Therapy Study)
Green, Anna, Newton, Robert U, Smith, David P, Tuffaha, Haitham, Galvao, Daniel A, Heathcote, Peter, Patel, Manish I, Christie, David, Egger, Sam, Sara, Sally AM, Heneka, Nicole, Chambers, Suzanne K and Dunn, Jeff. 2024. "Prostate Cancer Survivorship Essentials for men with prostate cancer on androgen deprivation therapy: protocol for a randomised controlled trial of a tele-based nurse-led survivorship care intervention (PCEssentials Hormone Therapy Study)." BMJ Open. 14 (3). https://doi.org/10.1136/bmjopen-2024-084412
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.
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
Experiences and needs of carers of Aboriginal children with a disability: a qualitative study
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
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