Abstract
Palliative care is associated with life-threatening diseases and death. To deepen understanding of the complexity of information need, information seeking behaviour becomes important in order to enhance the provision of adequate information and quality of services on the part of patients and carers in palliative care. This paper aims to investigate how patients and carer’s seek and use the information they need regarding palliative care. The study mainly assessed careers purpose of seeking information, preferable sources of health information and format, language and method of communication. The study used quantitative method with the aid of structured questionnaires distributed among 45 respondents. The study found that the main purpose to seek information is to find out details of the illness they were diagnosed by the doctor (66%). Many also indicated searching for the possible location of care within their area of living as another purpose (59%). The preferences source of seeking information is by consulting with the doctors, followed by talking to family members, friends and consulting with allied health workers. In terms of seeking format of information related to their illness, most respondents preferred printed material (42%) as opposed to electronic (36%) or audiovisual materials (24%). They also mostly preferred information in the Malay language (85%) including of those Chinese respondents. The least preferred source of information is personal health blogs and apps. Respondents preferred a face-to-face meeting with the doctors (55%) as a method of communication. The paper then provides useful suggestions that would facilitate information seeking and use of the information they need among patients and careers in Malaysia and other countries with similar conditions. Keywords: Information Seeking Behaviours, Method of Communication, Palliative Care, Purpose of Information Seeking, Sources of Health Information
Highlights
The enormous burden of life-threatening illnesses, including cancer, human immunodeficiency virus infection and others, such as sickle cell disease, associated with physical and psychosocial suffering explains the illustrious need for palliative care
It is an area of healthcare that focuses on relieving and preventing the suffering of people diagnosed with a terminal disease such as cancer, AIDS, liver and kidney failure, where the main purpose is to improve the patients, families and carer’s quality of life[1]
Palliative care was formally introduced by the Ministry of Health (MOH) in the year 19952, but its movement in Malaysia began in 1991 under NGO initiatives when Hospice Malaysia and the Penang Branch of the National Cancer Society used charitable donations to provide home care services[3,4]
Summary
The enormous burden of life-threatening illnesses, including cancer, human immunodeficiency virus infection and others, such as sickle cell disease, associated with physical and psychosocial suffering explains the illustrious need for palliative care. Most respondents were females with 64% (n = 30), while 36% (n = 17) of the respondents were male. The high number of female participants must have resulted from the gender nature of the social and cultural responsibility of women taking care of the sick, which enables them to participate in the study, compared to the number of male respondents. Out of these 47 respondents, 34 are married, 7 are single, 4 are widowed, while 2 respondents did not provide any information regarding their marital status.
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