Over the Great Wall: A Qualitative Descriptive Study of the Experiences and Preferences of Chinese Immigrant Families when Receiving Hospice Services in New Zealand

Abstract

This thesis discusses the background, processes, findings and recommendations of a qualitative descriptive study to explore and describe the experiences and preferences of Chinese immigrant families when receiving hospice services in New Zealand (NZ). The study arose from clinical practice questions about how hospice services were providing end-of-life care to the growing number of Chinese immigrants in NZ. With the assistance of a Cultural Advisor and a team of professional interpreters, eight bereaved Chinese immigrants living in the greater Auckland area who had cared for a terminally ill close family member with hospice service involvement were interviewed using a semi-structured approach. Participants were asked to describe their family support in NZ as well as their experiences of referral to a hospice, the types of care and treatment provided, communication processes between staff and the patient/family, care in the patient's last days of life, comparisons with care provided in their country of origin and suggestions for NZ hospice service improvements. Four key themes emerged: 1) Unfamiliar territory - participants were unfamiliar with the role or services of hospice and staff's lack of awareness of Chinese customs had led to distressing situations; 2) Service experiences and expectations - while some services were deemed useful others were not; participants had expected more medical treatments to manage the patient's symptoms; deaths in in-patient settings were less concerning to families and were preferred to deaths at home; 3) Support to cope - participants wanted more psychological support from hospice and regarded the maintenance of hope as a key component of a good death; 4) Uncovering sensitive information - families wanted to be consulted before sensitive information was discussed with patients and they preferred information to be uncovered slowly and gently to avoid causing the patient psychological harm. Recommendations for hospice service development included: improved access to information for families; greater provision of support services, especially for patients and families at home; education for hospice staff about Chinese culture and customs; options for in-patient admission in the last days of life; and the involvement of families in disclosure decisions. It is hoped that by responding to the experiences and preferences shared by participants, hospice services will be better equipped to address the end-of-life care needs of Chinese immigrant families.