Perceived information needs and social support of Chinese-Australian breast cancer survivors

Kwok, Cannas; White, Kathryn

doi:10.1007/s00520-014-2252-x

Cited by 47 publications

(112 citation statements)

References 33 publications

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“…economic status, nationality, sexual orientation, etc.) . While not as well studied as some of their health professional colleagues, there has been a marked increase over the last few years on better understanding the information needs of public health professionals, although this is not without its own challenges.…”

Section: Literature Reviewmentioning

confidence: 99%

Information needs of public health students

Lê

2014

Health Info Libraries J

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Section: Literature Reviewmentioning

confidence: 99%

Information needs of public health students

Lê

2014

Health Info Libraries J

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“…Existing content is largely selected and developed by healthcare providers. Existing methods for identifying patient needs, such as surveys used in [1][2][3][4][5], have limitations because they collect self-reported information, rather than observe survivors' informationseeking. These limitations should be addressed, especially before investing in new, more personalized platforms that answer questions.…”

Section: Introductionmentioning

confidence: 99%

“…Many use variants of the validated Supportive Care Needs Survey [1][2][3][4][5]. This survey covers five factors (psychological, health system and information, physical and daily living, patient care and support, and sexuality needs).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval (Preprint)

McRoy¹,

Rastegar-Mojarad²,

Wang³

et al. 2017

Preprint

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IntroductionGoal of this work Our project aims to assess the unmet information needs of breast cancer survivors (e.g. [1][2][3][4][5]) from the patients' perspectives. Such an assessment would be valuable for health care educators selecting and developing content to be incorporated in resources for breast cancer survivors. While existing resources cover many of the topics that breast cancer survivors might need, it is unknown how well these resources address their actual needs. Existing content is largely selected and developed by healthcare providers. Existing methods for identifying patient needs, such as surveys used in [1][2][3][4][5], have limitations because they collect self-reported information, rather than observe survivors' informationseeking. These limitations should be addressed, especially before investing in new, more personalized platforms that answer questions.Most existing resources for survivors, including brochures, books, and care plans, are static paper documents or webpages. By design, static content must balance the goals of covering the most commonly needed topics, while remaining manageable in size. By contrast, interactive electronic documents and services can be made available in numerous formats and, by dynamically targeting expressed information needs, can both cover a wide range of topics and remain usable for any individual.Creating new education materials can be costly, especially if they must be revised multiple times because they were not well-planned. Poorly planned resources risk being rejected, if patients cannot find the information they need easily. Voice assistants and chatbots that support question answering will require even more specific information about the topics of interest than a document-based information retrieval system, to deliver content in manageable size chunks. Thus, assessing patients' perspectives on their information needs, in the most authentic means possible, contributes to the goal of designing of new tools. BackgroundThere have been several recent efforts to assess the unmet needs of cancer patients. Many use variants of the validated Supportive Care Needs Survey [1][2][3][4][5]. This survey covers five factors (psychological, health system and information, physical and daily living, patient care and support, and sexuality needs). Among the most commonly reported needs are the need for counseling to deal with psychological distress and the need for information, including more information about treatment, prognosis, wellness, and managing symptoms and sideeffects. These factors provide a useful starting point for an automated analysis of needs, as well as aspects that might benefit from evidence obtained from a complementary method of assessment.Having multiple methods for assessing information needs would be valuable, as relying on self-reported needs allows for many sources of bias that limit the reliability of the results. For example, bias can arise from how questions are worded, how subjects are recruited, and the beliefs and psychology of indivi...

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“…Previous qualitative studies exploring the experiences of women with breast cancer from their own perspectives have included 16 and 21 participants (Engqvist Boman et al, 2017;van Ee et al, 2017), and the sample size with 20 participants (Paper I) can thus be said to correspond well with those sample sizes. Qualitative studies from the perspective of women with breast cancer who belong to an ethnic minority have included 19 (Lopez-Class et al, 2011) and 23 (Kwok & White, 2014) participants, which suggests that the sample size with 10 participants (Paper II) could be considered small. Research using thematic analysis has included a wide range of participants, from 12-20 (Douglas et al, 2009;Schnur et al, 2009;Schnur et al, 2011a) to 67 (Braun et al, 2013), which might indicate that nine families are a small number although the families consisted of 29 family members (Paper IV).…”

Section: Credibilitymentioning

confidence: 99%

On a journey for survival : everyday life during radiation therapy from the perspectives of women with breast cancer and their families

Holst-Hansson¹

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To everyone who has believed in me Vi människor är sociala varelser. Vi kommer till denna värld som ett resultat av andras handlingar. För vår överlevnad är vi ömsesidigt beroende av varandra. Vare sig vi vill eller inte finns det inte en enda stund i livet då vi inte drar nytta av sådant som andra har gjort eller gör. Det är därför knappast förvånande att det mesta av vår lycka uppstår i relationer med andra. Inte heller är det anmärkningsvärt om vår största glädje uppstår när vi motiveras av omsorg om andra. Men det är mera än så. Allt tyder på att altruistiska handlingar inte bara skapar lycka, utan att de också minskar vår upplevelse av lidande. Vårt beteende mot andra blir automatiskt positivt när vi handlar av omsorg mot dem. Det är för att vi inte har plats för några misstankar när hjärtat är fyllt av kärlek. Det är som en inre dörr öppnas och låter oss komma ut. ABSTRACTThis thesis focuses on women diagnosed with breast cancer and their family members. Since a breast cancer diagnosis and its subsequent treatment are a strenuous experience not only for the woman afflicted but also for her family members, this thesis aimed to explore the experiences of everyday life during radiation therapy from the perspectives of the woman with breast cancer and her family, as well as exploring families' experiences of participating in short family health conversations (SFamHC). All included studies were interview studies (Papers I, II, III & IV), where 30 women (20 in Paper I and 10 in Paper II) with breast cancer, 19 family members including the women with breast cancer (Paper III) and 9 families (Paper IV) were interviewed. The data from the interviews was analysed using qualitative content analysis (Papers I & II), a hermeneutical phenomenological method (Paper III) and thematic analysis (Paper IV).The women's experiences of breathing adapted radiation therapy (BART) (Paper I) were identified in an overall theme, The breath of life, as the women experienced the breathing as a way to influence their treatment and thus their survival. The overall theme could be divided into one main category: Participating in one's treatment, for good or ill, with four subcategories: Knowing one has done something good, Getting an extra bonushealthwise, The experience of being in control and Being in a hightechnology environment.Women born in Iraq and the former Yugoslavia, diagnosed with breast cancer and living in Sweden, experienced their everyday life during radiation therapy as a narrow and challenging treatment road to survival (Paper II). Their experiences were structured into three categories: Strategies for survival, Keeping up appearances and Staying in control. More focus should be on acknowledging the woman behind the diagnosis, regardless of her origin, in order to 10 develop individualised support programmes to help women cope with everyday life during radiation therapy.The families' lived experience when a family member is diagnosed with breast cancer (Paper III) was described as a challenging endeavour to regain an or...

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Perceived information needs and social support of Chinese-Australian breast cancer survivors

Abstract: Our study has provided practical insight into the information needs and social support of Chinese women with breast cancer. These findings can be used to inform the development of linguistically and culturally tailored support and survivorship interventions for this vulnerable population.

Cited by 47 publications

References 33 publications

Information needs of public health students

Information needs of public health students

Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval (Preprint)

On a journey for survival : everyday life during radiation therapy from the perspectives of women with breast cancer and their families

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