“I might not have cancer if you didn’t mention it”: a qualitative study on information needed by culturally diverse cancer survivors

O’Callaghan, Clare; Schofield, Penelope; Butow, Phyllis; Nolte, Linda; Price, Melanie A.; Tsintziras, Spiri; Sze, Ming; Thein, Thida; Yiu, Dorothy; Mireskandari, Shab; Goldstein, David; Jefford, Michael

doi:10.1007/s00520-015-2811-9

Cited by 30 publications

(66 citation statements)

References 32 publications

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“…We undertook focus group work and have published regarding this. [3] Some survivorship issues are shared between English-speaking Australian-born survivors and culturally diverse groups; however, we identified unique needs of particular culturally diverse groups. It is anticipated that these resources may be transferable and can assist HCPs when supporting diverse survivor groups in global settings.…”

Section: Information For Diverse Survivor Groupsmentioning

confidence: 99%

Transforming cancer survivorship care: An australian experience

Kinnane

Piper

Wiley

et al. 2017

Asia-Pacific Journal of Oncology Nursing

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Section: Information For Diverse Survivor Groupsmentioning

confidence: 99%

Transforming cancer survivorship care: An australian experience

Kinnane

Piper

Wiley

et al. 2017

Asia-Pacific Journal of Oncology Nursing

Self Cite

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“…A secondary reason given was the idea that a consequence of testing might be manifestation of the disorder. Comparisons can be made with cancer: many studies reveal the importance of culture when discussing cancer such as the belief by some patients that talking about the disease will cause the disease [37, 38], and how family members and the community treat affected patients differently [39]. Currently no studies similar to these have been carried out in the Caribbean region with respect to Huntington disease.…”

Section: Discussionmentioning

confidence: 99%

Presentation and care of a family with Huntington disease in a resource-limited community

et al. 2017

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BackgroundIn high-income countries patients with Huntington disease (HD) typically present to healthcare providers after developing involuntary movements, or for pre-symptomatic genetic testing if at familial risk. A positive family history is a major guide when considering the decision to perform genetic testing for HD, both in affected and unaffected patients. Management of HD is focused upon control of symptoms, whether motor, cognitive, or psychiatric. There is no clear evidence to date of any disease-modifying agents. Referral of families and caregivers for psychological and social support, whether to HD-focused centers, or through virtual communities, is viewed as an important consequence of diagnosis. The experience of healthcare for such progressive neurodegenerative diseases in low- and middle-income nations is in stark contrast with the standard of care in high-income countries.MethodsAn extended family with many members affected with an autosomal dominantly inherited movement disorder came to medical attention when one family member presented following a fall. Apart from one family member who was taking a benzodiazepine for involuntary movements, no other affected family members had sought medical attention. Members of this family live on several resource-limited Caribbean islands. Care of the chronically ill is often the responsibility of the family, and access to specialty care is difficult to obtain, or is unavailable. Computed tomography scan of one patient’s brain revealed severe caudate atrophy and moderate generalized cortical atrophy. Genetic diagnosis of HD was obtained.ResultsThrough family recollection and by direct observation we identified four generations of individuals affected with HD. Outreach programs and collaborations helped to provide medical imaging and genetic diagnosis. Additionally these efforts helped with patient and family support, education, and genetic counseling to many members of this family.ConclusionsAffected members of this family have limited healthcare access, and rely heavily on family support for care. Genetic and clinical diagnosis of these patients was impeded by lack of resources and lack of access to specialty care. Importantly, obtaining a definitive diagnosis has had a positive impact for this family by facilitating genetic counseling, education, community outreach, and dispelling myths regarding this hereditary disease and its progression.Electronic supplementary materialThe online version of this article (doi:10.1186/s40734-017-0050-6) contains supplementary material, which is available to authorized users.

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“…A recent Australian article described the information needs of culturally diverse cancer survivors. Respondents commented on insufficient information about available practical support, how to navigate the health system, difficulties in communicating with health professionals, misunderstandings about disease management and the need for more cancer‐related information on prognosis and treatment …”

Section: Discussionmentioning

confidence: 99%

“…Respondents commented on insufficient information about available practical support, how to navigate the health system, difficulties in communicating with health professionals, misunderstandings about disease management and the need for more cancer-related information on prognosis and treatment. 22 As doctors' advice was highly valued by all language groups, we developed visual resources that can complement the information provided in a medical encounter, without relying on advanced literacy skills.…”

Section: Discussionmentioning

confidence: 99%

Listening to the consumer voice: developing multilingual cancer information resources for people affected by liver cancer

Robotin

Porwal

Hopwood

et al. 2016

Health Expectations

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BackgroundIn Australia, liver cancer incidence is rising, particularly among people born in hepatitis B‐endemic countries. We sought to build an understanding of the information needs of people affected by liver cancer, to inform the design of in‐language consumer information resources.MethodsWe searched the World Wide Web for available in‐language consumer information and conducted a literature search on consumers’ information needs and their preferred means of accessing it. Qualitative data collection involved bilingual researchers conducting focus group discussions (26 participants) and in‐depth interviews (22 participants) with people affected by liver cancer in English, Vietnamese, Cantonese and Mandarin. Sessions were audio‐recorded, transcribed, translated and thematically analysed. The key themes and salient findings informed the development of in‐language multimedia information resources.ResultsMany consumer resources did not cater for people with low literacy levels. The participants wanted more information on cancer diagnostic and treatment options, nutrition and Chinese Medicine and experienced communication challenges speaking to health professionals. While Vietnamese speakers relied entirely on information provided by their doctors, other participants actively searched for additional treatment information and commonly used the Internet to source it. We developed multilingual, multimedia consumer information resources addressing identified consumer information needs through an iterative process, in collaboration with our multilingual consumer panel. These resources are available in four languages, as separate modules accessible online and in DVD format.ConclusionThis process enabled the development of user‐friendly patient resources, which complement health‐care provider information and supports informed patient decision making.

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“I might not have cancer if you didn’t mention it”: a qualitative study on information needed by culturally diverse cancer survivors

Cited by 30 publications

References 32 publications

Transforming cancer survivorship care: An australian experience

Transforming cancer survivorship care: An australian experience

Presentation and care of a family with Huntington disease in a resource-limited community

Listening to the consumer voice: developing multilingual cancer information resources for people affected by liver cancer

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