Surviving the system: Māori and Pacific whānau coping strategies to overcome health system barriers
The value, power and skill of Māori and Pacific whānau and their associated processes are often under-estimated and under-valued within health care. However, collectively, whānau have the expertise and resources that can sustain them in daily life and particularly when one of their members is under threat. Dealing with a child who has a life-threatening medical condition poses a threat to whānau through premature death being imminent and whakapapa being interrupted. Health care engagement processes are critical and can either enhance or inhibit the whānau journey through the health care system. The objectives of this study were to explore the coping mechanisms of Māori and Pacific whānau who had experience of continual transition and re-entry along the continuum of care who had a child diagnosed with a life-threatening medical condition. Whānau who had repeated health care engagement encounters were considered better able to assess their coping due to care being over longer periods, in diverse environments (for example, primary care, emergency departments) and engaging with multiple people. The study also investigated the role and influence of Ronald McDonald House on Māori and Pacific whānau coping due to this population being the highest users of the Auckland based houses. An Indigenous paradigm underpinned by Māori and Pacific methodologies and qualitative methods is presented in this thesis. Thirty sets of interviews (with collectives and individuals) took place. Twenty sets of interviews were undertaken with Māori and Pacific whānau alongside ten sets of stakeholders. Findings revealed that while whānau entered the health system with a primary focus on their child, their attention became temporarily and consistently re-directed to dealing with the barriers and distractions to fully participating in their child's health care. Engagement barriers and distractions occurred across four areas: policies and procedures, people and practice, environment, and resources. Whānau not only had to contend with values, ideals and practices that starkly contrasted with their own but they also had to decipher the contradictions entrenched in and between Western dominant health care practice. Coping for whānau in this study, therefore, was less about their child’s health and more about surviving the system. To combat barriers, findings revealed whānau utilised coping mechanisms and strategies that aligned with holistic processes. While some system-based supports were found to facilitate coping they were often limited to the point where whānau filled the gap. Coping elements were cultivated stemming from whānau rituals of encounter - roles, functions and processes that were embedded within their own system of care. Whānau became the expert and a critical resource to not only cope with their critically ill child but to engage, facilitate and support optimal health care provision and provide culturally relevant solutions for themselves, other whānau and medical staff. This research confirms that whānau know what they need to be and stay well, and on one level, have the means to implement it. However, it is the barriers, restrictions, racism and lack of resources and support at all levels of the health system and society that impinges on Māori and Pacific whānau benefiting from full participation.