What is palliative care? : the attitudes, knowledge and perceptions about palliative care services amongst advanced cancer patients and their family caregivers in Hong Kong

Abstract

Palliative care (PC) adopts a multidisciplinary team approach to provide a broad spectrum of services to patients and family caregivers. The goal of PC is to alleviate suffering experienced during the late trajectory of disease, and maximizing comfort and quality of life (QOL). World Health Organization (WHO) suggested there is need to introduce and refer PC earlier in the disease experience in order to minimize adverse health outcomes, such as physical distress and poor mental health (1). However, the timeliness of referral and acceptability to PC is often late, and near the end-of-life (EOL). Prior- knowledge, awareness and cultural influences regarding PC as EOL care could hinder the timeliness of referral and acceptability among patients and family caregivers. The aims of this thesis was to 1) Explore the attitude and awareness about PC services amongst advanced cancer patients and family caregivers, 2) Explore the knowledge and perception about PC services amongst advanced cancer patients and family caregivers; and 3) Broaden the understanding on utilization of PC services advanced cancer patients and family caregivers in Hong Kong.

Eighty-one advanced cancer patients and advanced cancer patients’ family caregivers were recruited for the in-depth qualitative interviews. All respondents were above the age of 18, Cantonese speaker and who is a resident of Hong Kong. All qualitative interviews were audio-recorded and transcribed. Grounded Theory analysis were conducted. Respondents understood what was PC and the services it provided, and described the primary goals of such care. There was a mutual understanding of PC as a form of EOL care; which could be referred and utilized at the end stage of disease. Their knowledge and awareness was heightened by the exchange of information transmitted through the respondents’ social networks, and media exposure. Respondents reported PC could ease pain and suffering for EOL patients, and described how PC could improve both physical wellbeing, and mental health. There was a low perceived need of PC among the respondents; as they did not identify themselves as EOL patients. However, findings revealed a change of knowledge and awareness pertaining to PC after the respondents’ first encounter with the PC team. In addition, respondents reported recommending PC to others, and earlier referral was preferred.

This thesis extends the knowledge and awareness of PC among Chinese advanced cancer patients and family caregivers. Prior- knowledge and awareness regarding PC resulted in the low perceived need and the timeliness of the referral process. However, personal encounter and utilization of PC services had debunked the traditional perspective of PC as EOL care.