'It was peaceful, it was beautiful': A qualitative study of family understandings of good end-of-life care in hospital for people dying in advanced age.

BACKGROUND: Hospitals are important sites of end-of-life care, particularly for older people. A need has been identified to understand best practice in hospital end-of-life care from the service-user perspective. AIM: The aim of this study was to identify examples of good care received in the hospital setting during the last 3 months of life for people dying in advanced age from the perspective of bereaved family members. DESIGN: A social constructionist framework underpinned a qualitative research design. Data were analysed thematically drawing on an appreciative enquiry framework. SETTING/PARTICIPANTS: Interviews were conducted with 58 bereaved family carers nominated by 52 people aged >80 years participating in a longitudinal study of ageing. Data were analysed for the 21 of 34 cases where family members were 'extremely' or 'very' satisfied with a public hospital admission their older relative experienced in their last 3 months of life. RESULTS: Participants' accounts of good care aligned with Dewar and Nolan's relation-centred compassionate care model: (1) a relationship based on empathy; (2) effective interactions between patients/families and staff; (3) contextualised knowledge of the patient/family; and (4) patients/families being active participants in care. We extended the model to the bicultural context of Aotearoa, New Zealand. CONCLUSION: We identify concrete actions that clinicians working in acute hospitals can integrate into their practice to deliver end-of-life care with which families are highly satisfied. Further research is required to support the implementation of the relation-centred compassionate care model within hospitals, with suitable adaptations for local context, and explore the subsequent impact on patients, families and staff.

A critical exploration of a collaborative Kaupapa Maori consistent research project on physician-assisted dying.

AIM: This paper critically explores the research approach undertaken by Maori and tauiwi researchers working alongside kaumatua within the context of physician-assisted dying. We critically explore the collaborative process we undertook in framing the research context and discuss the rewards and challenges that emerged. METHOD: The research this critical discussion draws on undertook a qualitative Kaupapa Maori consistent research approach and drew on the principles of an Interface Research approach. The paper focuses on the collaborative approach taken between the 10 researchers involved in the study. RESULTS: Challenges identified within the collaborative Kaupapa Maori consistent research process included: determining appropriate authority and representation of researchers and participants; maintaining clear communication; time and logistical management. The key strengths that emerged from this research design were: establishing a culturally safe and robust research process; an ability to build and maintain relationships between researchers and participants; and the opportunity to develop academic research skills between researchers and participants. CONCLUSION: Collaborative Kaupapa Maori consistent research approaches to research can enable accountability, control and representation throughout the entire research process. Given the rich research results achieved and personal rewards gained from this study design, we would advocate for the application of such approaches within health research contexts.

PA12†Is digital storytelling ka pai for new zealand māori? using digital storytelling as a method to explore whānau end of life caregiving experiences: a pilot study.

BACKGROUND: Māori regard stories as a preferred method for imparting knowledge through waiata (song), moteatea (poetry), kauwhau (moralistic tale), pakiwaitara (story) and purakau (myths). Storytelling is also an expression of tinorangatiratanga (self-determination); Māori have the right to manage their knowledge, which includes embodiment in forms transcending typical western formulations. Digital storytelling is a process by which 'ordinary people' create short autobiographical videos. It has found application in numerous disciplines including public health and has been used to articulatethe experiences of those often excluded from knowledge production. AIM: To explore the use of digital storytelling as a research method for learning about whānau (family) experiences providing end of life care for kaumātua (older people). METHODS: Eight Māori and their nominated co-creators attended a three-day digital story telling workshop led by co-researchers Shuchi Kothari and Sarina Pearson. They were guided in the creation of first-person digital stories about caring for kaumātua. The videos were shared at a group screening, and participants completed questionnaires about the workshop and their videos. A Kaupapa Māori narrative analysis was applied to their stories to gain new perspectives on Māori end of life caregiving practices. (Kaupapa Maori research privileges Maori worldviews and indigenous knowledge systems.) RESULTS: Digital storytelling is an appropriate method as Māori is an oral/aural society. It allows Māori to share their stories with others, thus promoting community support at the end of life, befitting a public health approach. CONCLUSION: Digital storytelling can be a useful method for Māori to express their experiences providing end of life caregiving.