Tāpinga 'a Maama*: Pacific Life and Death in Advanced Age – Presentation Overview
Conference Theme: Mahi Tātou – ‘Working Together’: A palliative care priority
Pacific deaths in New Zealand are projected to increase by 54% from 1,300 in 2016 to 2,000 in 2038 while Samoan deaths are projected to increase from 600 to 1,100, an increase of 83%. The projected ageing of deaths over the same period is significant with more deaths at older ages and potentially more deaths with multi-morbidity, frailty and dementia. This is expected to challenge communities and health service delivery models.
Pacific older adults are among the disadvantaged dying, experiencing high levels of unmet needs and poor access to palliative care services. The Adult Palliative Care Services Review (Ministry of Health, 2016) identified an urgent need for information regarding Pacific peoples’ experiences to ensure services meet the needs of our older adults and their aiga (family) carers. Such research is particularly crucial given the concerns raised by Pacific communities about dissonances between the nature of care and support preferred by Pacific older adults and their aiga at end of life, and the current provision of palliative care services.
Our study addresses that knowledge gap and explores the end of life circumstances of Pacific people dying in advanced age, and the experiences and challenges faced by their aiga who carry out the bulk of their care.
Using rigorous qualitative methods and applying research principles of engaging with Pacific peoples, we interviewed 33 aiga carers/families and produced a music video and five digital stories. Our preliminary findings highlight a range of lived experiences, extensive caring tasks, the importance of family caring for loved ones at home, and that informal supports played a key role. Accessing formal support was mixed and some practical needs were not met.
The next steps in the study are to complete focus group stakeholder interviews, and share the results with participants, stakeholders, and Pacific and research communities.
Acknowledgements: Participants and families, Pacific Advisory Group, Stakeholders, Ministry for Business Innovation and Employment, University of Otago’s School of Physiotherapy, and University of Auckland’s School of Nursing.
(* From time to eternity in Tongan language)
Research outputs in the first eight months of project operations were presented to the Te Ārai Palliative Care and End of Life Research Group Symposium in Auckland, New Zealand, on 3 November 2017. The symposium was hosted by the Te Ārai Palliative Care and End of Life Research Group and addressed the theme of Mahi Tātou – ‘Working Together’: A palliative care priority. Our presentation highlighted the need to strategically explore issues from multiple perspectives, including from individual contexts of people’s experiences, and the significant contribution from Pacific family caregivers to New Zealand’s wider health system. Tāpinga ‘a Maama is a two-year (2017-2019) National Science Challenge for Ageing Well study funded by the Ministry for Business, Innovation and Employment.
Caring to the beat: Our Digital Lali – Presentation Overview
Conference Theme: Modernity, Memory and the Pacific
The tradition of storytelling in the Pacific has been around since the first Pacific peoples. Storytelling is a way to preserve history, and with that, memory. Memories are empowering and beautiful because in a sense, they keep a person's spirit and culture alive, allowing the presence of the senses to pass back and forward in time, throughout generations.
As technology has evolved over the years, the ability to preserve these memories through sound, music, photographs, videos, and digital stories has as well. We use the media of digital stories to record the memories of loved ones lost physically in and to the Pacific community but remembered spiritually, to ensure the survival of the cultural custom of storytelling. For most individuals, growing old is an accomplishment, that one has lived a long life, and so it is necessary to address current issues among our older Pacific people.
As governments have called for programmes and policies that shift palliative care into the community, and in an attempt to better understand the nature of the relationship between Pacific family carers and the older family members they cared for at end of life, we have created digital stories in collaboration with Pacific caregivers. This form of media was chosen because of the ability to combine the power and personal connection of the storyteller’s own voice along with powerful images, music and video of their loved ones. This subject, although very private across Pacific communities, is necessary to share openly because of the support it gives others in similar situations and awareness of current issues faced by family carers, and to let our older adults know that we honor and value them for their love and life-long service to family and community.
Our digital stories are an addition to the current research Tāpinga ‘a Maama*: Pacific Life and Death in Advanced Age led by Dr Ofa Dewes, and funded by the Ministry for Business, Innovation and Employment through the National Science Challenge for Ageing Well.
(* From time to eternity in Tongan language)
Our research with Pacific peoples and stakeholders was presented at the Oceanic Memory: Islands, Ecologies, Peoples conference in Christchurch, New Zealand, 30 November - 2 December 2017. The conference was hosted by Canterbury University’s College of Arts and the Macmillan Brown Centre for Pacific Studies, in conjunction with Memory Research in Aotearoa Network. This conference addressed the complex politics of cultural memory in the Pacific, noting the range of contexts that shape memory and its articulation.
Caring to the beat: Expressing the end of life care and support needs of Pacific older adults and their aiga (family) caregivers – Presentation Overview
Conference Session: High Performance
Governments have called for programmes and policies that shift palliative care into the community. As a result, family caregiver responsibilities have increased. Already it has been estimated that family caregivers provide 75-90% of home-based care for people near the end of life. With the added responsibility comes considerable burden. Caregivers may be unwell themselves as well as financially compromised. Pacific caregivers in New Zealand are among those at particular risk due to the additional socioeconomic pressures they confront. However, little is known about how best to ameliorate the challenges they face and how their needs and access to palliative support and care may be met by health services.
The goal of our research, therefore, was to add to evidence-based knowledge about the experiences and expectations of aiga carers and families, and identify approaches to palliative care services that healthcare providers can use. Furthermore, our intention was to translate that knowledge into digital stories and capture short videos in which aiga speak for themselves about their experiences providing care.
This presentation describes the project we undertook with members of the Pacific community to achieve our research goals. We explain the application of our research design, discuss some of the results of our work and show the short music video and digital resources. The presentation provides information useful for engaging with local communities, addressing related needs to palliative and end of life care and support, and creating resources of particular value for groups underrepresented in palliative care research.
Tāpinga ‘a Maama: Pacific Life and Death in Advanced Age was presented to the Needs Assessment Service Co-ordination Association conference in Auckland, New Zealand, on 8 September 2017. The conference provided the opportunity for attendees from across the streams of disability, mental health and older people’s health to network and hear from presenters who help to inform and support the work of NASC colleagues and the communities they serve. Sponsors of the conference included MyCare, Taikura Trust, LifeLinks, CAS’n’OVA Productions, and the Ministry of Health.