‘O le toe Fa’amoemoe o le Aiga’ A Family’s Last Hope: Understandings of Palliative Care & Hospice Care Services among Samoan Women Family Caregivers

Abstract

Literature indicates that populations worldwide are ageing and non-communicable diseases (NCDs) are more likely to affect older people 60 years and over. Older people are also more likely to suffer from more than one chronic condition and throughout the illness and at the end of life, these conditions can cause complex problems. Thus, the need for palliative care is only going to increase. It is also important to note that although palliative and hospice care services were primarily provided to cancer patients and their families, it is important that patients suffering from non-malignant conditions and their families are able to access these services as well. In New Zealand, Pacific people are more likely to suffer from NCDs with cardiovascular diseases, cancer, stroke and diabetes complications being major causes of death among Pacific people. Pacific people also prefer to be cared for at home by family however, it is well known that Pacific people including the Samoan community are less likely to access and use palliative care and hospice care services. There is also a paucity of information around reasons for the lack of use of palliative and hospice care services and strategies to improve access within a Pacific context. Therefore, this research aims to explore the understandings of Samoan female family caregivers, 20 years and older, caring for an elderly relative diagnosed with a life limiting condition, in Auckland, New Zealand. The objectives were to explore the understandings and experiences of Samoan female family caregivers around palliative and hospice care services, identify support mechanisms offered through palliative care and hospice care services, explore any challenges or barriers in accessing palliative and hospice care services for elderly relatives and examine effective ways to provide information about palliative care and hospice care services to the family caregivers of dying relatives in the Samoan community in New Zealand. For this research a qualitative design was utilised where one on one semi structured interviews were carried out on twelve participants. To be suitable to take part in this study, participants needed to be a) Samoan female b) Samoan born or New Zealand born c) 18 years and over d) residing in Auckland, New Zealand e) must be caring for an elderly relative who has been diagnosed with a terminal condition 60 years and over. The emergent data was analysed according to Constructivist Grounded Theory approach which included three main coding processes – initial coding, focussed coding and theoretical coding. The main themes which emerged from the analysis were classified according to the objectives of this study. Caring for elderly relatives when they have been diagnosed with a terminal illness or life limiting condition is a family affair and there were many factors that affected decisions to access and use palliative and hospice services. These factors included cultural misconceptions especially around hospice services where many participants believed hospice services to be a place where family members are sent to die. There was also a lack of caregiver knowledge and information about the need for palliative and hospice care. Other challenges included the lack of referral to palliative or hospice care services by health professionals especially primary physicians. There were many strategies the participants suggested in order to improve access and utilisation of hospice and palliative care services. These include cultural specific education and information, raising awareness among the Samoan community and increasing cultural competency and training of health professionals. This research acknowledges the importance of addressing cultural misconceptions around hospice care services, and the need for culturally appropriate delivery of education and information about palliative and hospice care services as this is strongly needed among Samoan family caregivers. This is to ensure family caregivers know the services and support available for them and their loved one who is dying and can access these services. In doing so, this may help to alleviate the pain and symptoms of loved ones as well as ensure family caregivers are supported throughout the diagnosis and after the death and burial of their elderly relative with the provision of grief and bereavement support.