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Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients.

ABSTRACT: Amongst Indigenous Australians, "cancer" has negative connotations that detrimentally impact upon access to cancer care services. Barriers to accessing cancer services amongst Indigenous Australians are widely reported. In contrast, factors that facilitate this cohort to successfully navigate cancer care services ("enablers") are scarcely reported in the literature. Through qualitative interviews, this article examines factors that assist Indigenous Australians to have positive cancer experiences. Semi-structured interviews were conducted with twelve adult Indigenous oncology patients recruited from a tertiary hospital in Queensland, Australia during 2012-2014. Data generated from the interviews were independently reviewed by two researchers via inductive thematic analytical processes. Discussions followed by consensus on the major categories allowed conclusions to be drawn on potential enablers. Two major categories of enablers were identified by the researchers: resilience and communication. Individual's intrinsic strength, their coping strategies, and receipt of support improved participant's resilience and consequently supported a positive experience. Communication methods and an effective patient-provider relationship facilitated positive experiences for participants. Despite potential barriers to access of care for Indigenous cancer patients, participants in the study demonstrated that it was still possible to focus on the positive aspects of their cancer experiences. Many participants explained how cancer changed their outlook on life, often for the better, with many feeling empowered as they progressed through their cancer diagnosis and treatment processes.

SUBMITTER: Tam L

PROVIDER: S-EPMC5800234 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients.

Tam Laura L Garvey Gail G Meiklejohn Judith J Martin Jennifer J Adams Jon J Walpole Euan E Fay Michael M Valery Patricia P

International journal of environmental research and public health 20180115 1

Amongst Indigenous Australians, "cancer" has negative connotations that detrimentally impact upon access to cancer care services. Barriers to accessing cancer services amongst Indigenous Australians are widely reported. In contrast, factors that facilitate this cohort to successfully navigate cancer care services ("enablers") are scarcely reported in the literature. Through qualitative interviews, this article examines factors that assist Indigenous Australians to have positive cancer experience ...[more]

PMID: 29342934

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Project description:Aboriginal and Torres Strait Islander (collectively, Indigenous Australian) women experience a higher burden of cervical cancer than other women. The National Cervical Screening Program (NCSP) is failing to meet the needs of Indigenous Australian women, resulting in many women not regularly participating in cervical screening. However, one third of Indigenous Australian women do participate in cervical screening. The reasons that some women in this population commence and continue to screen remain unheard but could provide insights to support women who currently do not participate. We aimed to describe Indigenous Australian women's experiences and views of participation in cervical screening by yarning (a culturally-appropriate interview technique) with 50 Indigenous Australian women aged 25-70 years who had completed cervical screening in the past five years, recruited via Primary Health Care Centres (PHCCs) from three jurisdictions. Aboriginal or Torres Strait Islander women researchers conducted the interviews. Thematic analysis identified six themes: screening as a means of staying strong and in control; overcoming fears, shame, and negative experiences of screening; needing to talk openly about screening; the value of trusting relationships with screening providers; logistical barriers; and overcoming privacy concerns for women employed at PHCCs. Despite describing screening as shameful, invasive, and uncomfortable, women perceived it as a way of staying healthy and exerting control over their health. This ultimately supported their participation and a sense of empowerment. Women valued open discussion about screening and strong relationships with health providers. We identified logistical barriers and specific barriers faced by women employed at PHCCs. This study is strengthened by a research approach that centred Indigenous Australian women's voices. Understanding the experiences of Indigenous Australian women who participate in screening will help screening providers support women to start and continue to screen regularly. Recommendations for practice are provided.

Project description:ObjectivesExplore Aboriginal women's responses to an adapted Risk Behaviour Diagnosis (RBD) Scale about smoking in pregnancy.Methods and designAn Aboriginal researcher interviewed women and completed a cross-sectional survey including 20 Likert scales.SettingAboriginal Community Controlled Health Services, community groups and playgroups and Aboriginal Maternity Services in regional New South Wales, Australia.ParticipantsAboriginal women (n=20) who were pregnant or gave birth in the preceding 18 months; included if they had experiences of smoking or quitting during pregnancy.Primary and secondary outcome measuresPrimary outcomes: RBD constructs of perceived threat and perceived efficacy, dichotomised into high versus low. Women who had quit smoking, answered retrospectively.Secondary outcome measuressmoking status, intentions to quit smoking (danger control), protection responses (to babies/others) and fear control responses (denial/refutation). Scales were assessed for internal consistency. A chart plotted responses from low to high efficacy and low to high threat.ResultsRBD Scales had moderate-to-good consistency (0.67-0.89 Cronbach's alpha). Nine women had quit and 11 were smoking; 6 currently pregnant and 14 recently pregnant. Mean efficacy level 3.9 (SD=0.7); mean threat 4.3 (SD=0.7). On inspection, a scatter plot revealed a cluster of 12 women in the high efficacy-high threat quadrant-of these 11 had quit or had a high intention of quitting. Conversely, a group with low threat-low efficacy (5 women) were all smokers and had high fear control responses: of these, 4 had low protection responses. Pregnant women had a non-significant trend for higher threat and lower efficacy, than those previously pregnant.ConclusionFindings were consistent with a previously validated RBD Scale showing Aboriginal smokers with high efficacy-high threat had greater intentions to quit smoking. The RBD Scale could have diagnostic potential to tailor health messages. Longitudinal research required with a larger sample to explore associations with the RBD Scale and quitting.

Project description:BackgroundThere is a disparity in the burden of gynaecological cancer for Indigenous women compared with non-Indigenous women in Australia. Understanding how Indigenous women currently experience gynaecological cancer care services and factors that impact on their engagement with care is critical. This study explored Indigenous Australian women's experience of gynaecological cancer care at a major metropolitan hospital in Queensland.MethodsIndigenous women receiving care at a major metropolitan Queensland hospital for investigation or diagnosis of gynaecological cancer were invited to participate in a larger longitudinal study exploring women's experiences of gynaecological cancer care. This component was an in-depth, qualitative interview exploring the women's experiences of hospital care at approximately three-month post initial referral. A peer-approach was used to interview women. Hospital-based care providers involved in the care of Indigenous gynaecological cancer patients were invited to be interviewed. Interviews were transcribed and thematically analysed using an interpretative phenomenological approach enabling a multi-layered, contextualised understanding of the patients' experience and their interaction with tertiary cancer services.ResultsEight Indigenous patients and 18 care providers were interviewed. Analysis of all interviews revealed four broad issues affecting Indigenous patients' early experiences of care: (1) navigating the system, impacted by timely diagnosis, access to support services and follow up; (2) communication and decision-making, patients' decision-making, efficacy of doctor-patient communication, and patients' knowledge about cancer; (3) coping with treatment demands, was impacted by emotional stress, access to services and support by hospital staff; and (4) feeling welcome and safe in the hospital, impacted by patients' relationship with care providers and their access to culturally-safe services. The combination of factors impacting these women's' experience of gynaecological care commonly left these women at breaking point, often with limited access to information, resources or support.ConclusionsOur findings revealed that experiences of cancer care for Indigenous women are overlain by challenges associated with late referral, misdiagnosis, miscommunication, lack of information, logistics in accessing treatment and services and system cultural insensitivities. Our findings offer insights that can inform cancer care provision to more effectively support Indigenous women accessing gynaecological cancer services.

Dataset Information

Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients.

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Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients.

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