Information Needs and Seeking Experiences of Family Members of Cancer Patients

Canada has an aging population with the fastest growing age groups (80 and 45-64 years old) vulnerable to age-related diseases such as Alzheimer’s disease. Caregiving responsibilities often fall to the family members of the afflicted without much attention and consideration being placed on the information needs of these caregivers. We call for a better understanding of these caregivers' information needs and uses by social policy makers as well as information providers.La population du Canada a tendance à vieillir considérablement, avec la hausse la plus rapide dans les groupes d’âge (80 et 45 à 64 ans). Les personnes âges sont très vulnérables à toute sorte de maladies, telles que la maladie d’Alzheimer. La responsabilité revient souvent aux membres de la famille qui doivent prendre soin des personnes atteintes de cette maladie. Or, nous ne connaissons que peu de chose sur les besoins en information des personnes qui prennent soin de ces malades de l’Alzheimer : qui sont-ils ? Quelles sont leurs sources...

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The Components of Information Literacy Treatment in Women Cancer Patients (Preprint)

10.2196/preprints.18622 ◽

2020 ◽

Author(s):

Mahboobeh Farzin ◽

Hassan Behzadi ◽

Azam Sanatjoo ◽

Soodabeh Shahidsaleth

Keyword(s):

Cancer Patients ◽

Information Literacy ◽

Information Needs ◽

Sampling Procedure ◽

Health Centers ◽

Medical Tests ◽

Medical Terms ◽

Health Authorities ◽

Source Of Information ◽

Cluster Random Sampling

BACKGROUND The information literacy treatment, which comprises an important part of the process of disease, is one of the aspects of health literacy and this concept has been explored in fewer studies. OBJECTIVE The purpose of the present study is to investigate the state of the components of information literacy treatment in Women cancer patients. METHODS This is an applied, survey-based study. The population consists of 143 Women cancer patients were selected employing a cluster random sampling procedure. Data were collected through a researcher-made questionnaire. The questionnaire includes 37 questions consisting of six categories—medications, treatment methods, nutrition, medical tests, treatment costs, and sport exercise. RESULTS The findings showed that patients had the most information needs in the five components (except sport exercise). In addition to, the most important source of information for patients was the doctor and, of course, some of the other medical staff. Also, all the identified criteria for cancer patients were important in using the information sources for treatment. The problems such as: specialized content, unfamiliarity with the medical terms, the complexity of the treatment process, are very important to the patients. CONCLUSIONS The health professionals play an important role in shortening the interval between the patients` need for information and receiving information. It is recommended for the health authorities to hold free classes in health centers and prepare simple and comprehensible materials in these courses.

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Users’ experiences of an evidence-informed health information website for spinal cord injury: A prospective qualitative study across the hospital and community setting (Preprint)

10.2196/preprints.20345 ◽

2020 ◽

Author(s):

Christina Cassady ◽

William Ben Mortenson ◽

Andrea F Townson ◽

Shannon Sproule ◽

Janice Jennifer Eng

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Health Information ◽

Information Needs ◽

Information Source ◽

Family Members ◽

Hospital Setting ◽

Community Setting ◽

Therapeutic Education ◽

Cord Injury

BACKGROUND Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI). OBJECTIVE The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour. METHODS Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis. RESULTS The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections. CONCLUSIONS Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.

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Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.01.085 ◽

2021 ◽

Vol 61 (3) ◽

pp. 681-682

Author(s):

Gwenyth Day ◽

Marilyn Swinton ◽

Danielle Bear ◽

Peter Phung ◽

Allegra Bell ◽

...

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Life Experience ◽

Family Members ◽

Oncology Ward

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Truth-Telling to Terminal Stage Cancer Patients in India: A Study of the General Denial to Disclosure

OMEGA - Journal of Death and Dying ◽

10.1177/00302228211032732 ◽

2021 ◽

pp. 003022282110327

Author(s):

Souvik Mondal

Keyword(s):

Cancer Patients ◽

Urban Areas ◽

Family Members ◽

Public Hospitals ◽

Truth Telling ◽

Full Disclosure ◽

Terminal Stage ◽

Rural And Urban Areas ◽

Rural And Urban ◽

Private And Public

Telling the truth to the terminal-stage cancer patients differs socio-culturally based on the priorities assigned to patients’ autonomy and the principles of beneficence and non-maleficence. After conducting in-depth interviews with 108 terminal-stage adult cancer patients, 306 family members, and 25 physicians, in private and public hospitals in both rural and urban areas, in the state of West Bengal, India it has been found that even though 85.60% of the patients prefer full disclosure, only 22.03% are actually informed. Though demographic characteristics, like age, gender, education etc., have marginal influences over the pattern of truth-telling, the main factor behind non-disclosure is the family members’ preference for principles of beneficence and non-maleficence over patient autonomy. Hence, only 9.32% of those 118 patients’ family members have agreed to full disclosure. Physicians comply with this culture of non-disclosure as family, in India, is the centre of decision-making and acts as the primary unit of care.

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Information needs of breast cancer patients and how educational status influence their information needs in Ghana

Journal of Librarianship and Information Science ◽

10.1177/0961000620981611 ◽

2021 ◽

pp. 096100062098161

Author(s):

Benedicta Boadi ◽

George Tesilimi Banji ◽

Patrick Adzobu ◽

Stephen Okyere

Keyword(s):

Breast Cancer ◽

Cancer Patients ◽

Health Information ◽

Information Literacy ◽

Information Needs ◽

Educational Status ◽

Health Facilities ◽

Military Hospital ◽

Specific Information ◽

Breast Cancer Patients

Health information literacy plays a critical role in self-management practices among patients living with chronic health conditions. However, there are limited studies on information needs among breast cancer patients in Ghana. This paper therefore investigated the information needs of women living with breast cancer in Ghana and how educational status influenced their information needs. The study was conducted in two health facilities in Accra, Ghana (37 Military Hospital and Sweden Ghana Medical Centre). A total of 75 breast cancer patients were conveniently selected from the two health facilities for the study. The instrument used to elicit relevant data for this study was a questionnaire using the survey design. Data was analysed descriptively. The findings of the study revealed that the information needs of the breast cancer patients investigated were centred mainly around treatment and management information and less around preventive information. The patients also ranked diagnostic information as their highest need, followed by physical care information, treatment information, psychosocial information and disease-specific information in that order. Patients with higher education reported higher information need on all the five domains compared to those with lower education. The study therefore recommended that management of health facilities make health information literacy an integral component of their treatment and management of breast cancer.

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