Abstract
Background: Due to the rapidly aging population, the need for palliative care in New
Zealand is expected to increase substantially. Access to palliative health is stated to be a basic
human right, this includes access to palliative health care without discrimination, access to
basic medication for symptom relief, and inclusion in palliative care policies. Yet, Pacific
peoples in New Zealand experience barriers in accessing and utilising palliative care services
and experience barriers to accessing culturally appropriate care.
Cook Islanders are part of the New Zealand realm, are New Zealand citizens and the vast
majority reside in New Zealand. A health system that is responsive to the needs of Cook
Islands people is essential for the wellbeing of Cook Islands families. Palliative care is stated
to be the ethical responsibility of health systems. This is reflected in the New Zealand
palliative care strategy which outlines that all people in need of palliative care should receive
timely and culturally appropriate palliative care. However, little is known on the experiences
and understanding of palliative and end of life care for Pacific peoples in New Zealand and
even less on the experiences and needs of Cook Islanders.
Research aim: This study aimed to explore the traditional and contemporary palliative care
and end-of-life care practices of Cook Islanders in New Zealand from a Cook Islands
perspective. The overarching aim is to generate a theory that articulates Cook Islands
people’s concepts and practice of palliative care in New Zealand and to develop a Cook
Islands specific model that can be used to guide palliative care services in New Zealand.
Method: The research utilised constructivist grounded theory and the Tivaevae model to
construct a theory of palliative care for Cook Islands people in New Zealand. Constructivism
grounded theory was utilised as a methodology to analyse data in order to construct theory,
while the Tivaevae model was utilised to connect the research to Cook Islands paradigms that
reflect Cook Islands values. The underlying philosophical paradigm of pragmatism was
utilised, anchoring the research to the creation of knowledge which has practical
implications.
Findings: A total of 28 participants were interviewed, including family members (n =14)
who had cared for a palliative family member, healthcare practitioners (n =11) and holders ofII
traditional or spiritual knowledge or ta’unga (n =3). The findings revealed three key concepts
which informed the theory constructed. The key concepts were, palliative care is a spiritual
journey in which spirituality is omnipresent. The kopu tangata (family) were a vital
component of palliative care and the family as a group experience their own life course
transition during the palliative care journey. Family is inclusive of the ancestors, and
ancestral veneration plays a part in palliative care and the grieving stage of palliative care.
The New Zealand location impacts on the palliative care journey through the transnational
identity of Cook Islands people and the various adaptations Cook Islands people have applied
in New Zealand.
Conclusion: A theory of palliative care potentially applicable for Cook Islanders living in
New Zealand was constructed. The model “te vaerua kopu tangata ora” (the spiritual
wellness of the family) as a conceptual model was created from the theorisation of the results.
The model symbolises the transition experienced by the palliative family member and their
wider family. The model aids in showing how the components of the theory work together to
conceptualise an understanding of palliative care for Cook Islanders in New Zealand.
Palliative care in this study was defined as a spiritual transition in which the family, inclusive
of the wider family and the ancestors, supports the palliative family member to transition
from the world of the living to another realm defined by the family. While the family
transition to new roles within the family structure. As such, the model is a family model. It is
pivotal that families are enabled to provide care for their palliative family member by
providing family based care and acknowledging the life stage transition the family unit
experience during palliative, end of life care and beyond. Additionally, palliative care was
viewed through a long view of time, meaning the transition from death to grieving may
follow a long trajectory. Supporting families to practise rituals and ceremonies to venerate
their ancestors is important as these rituals aid the family to maintain balance during their
transition and grief. Additionally, the research highlighted the gaps within the current
palliative care research and the need for future research in the area.