Stella Black

Working bi-culturally within a palliative care research context: the development of the Te Ārai Palliative Care and End of Life Research Group

Abstract It is increasingly recognised that palliative care research needs to pay more attention to culture if the diverse needs of service users are to be appropriately met. However, in most countries research, practice and policy in palliative care remains predicated upon a specific cultural understanding of the ‘good death’, firmly rooted in a Western world view. In this paper we present the formation of a new multi-disciplinary palliative care research group, explicitly set up along bi-cultural lines – The Te Ārai Palliative Care and End of Life Research Group to face challenges of traditional paradigms of palliative care in the specific context of Aotearoa New Zealand (NZ). We outline the rationale for establishing a research group which meets both Māori (indigenous people of NZ) and conventional Western standards for conducting academic research, describe our bi-cultural framework, and provide examples of how it shaped the design of three recently completed projects. We also situate our experience within the wider international literature, identifying transferable lessons for researchers wanting to do palliative care research with indigenous and minority ethnic and cultural groups.

What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers

Background: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. Aim: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. Design: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis. Setting/participants: A total of 58 participants (19 Māori and 39 non-Māori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews. Results: A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death. Conclusion: Our study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.

How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study:

Background: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The ‘patient navigator’ model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps. Aim: To explore the role family caregivers play in helping people dying in advanced old age navigate health services at the end of life. Design: Qualitative study using semi-structured interviews and analysed via thematic analysis. Setting/participants: A total of 58 interviews were conducted in New Zealand with the family caregivers of 52 deceased older relatives who had been participants in Life and Living in Advanced Age: a Cohort Study in New Zealand. Results: Fragmentation of services was the key concern, causing distress both for the older person and their family caregivers. Carers identified and engaged with appropriate services in order to facilitate care and treatment. Their involvement was not always met by healthcare professionals with respect or regard to their knowledge of the older person’s needs. Conclusion: Family caregivers are trying to help their older relatives overcome the limitations of fragmented health systems at the end of life. They are doing so at times by stepping in to perform patient navigator tasks usually conceptualised as a role for statutory services to carry out. Programmes and services need to be implemented that will better support family carers who are acting as care navigators.

Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context

BackgroundThe World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. This is especially imperative for Indigenous populations and other groups underrepresented in the palliative care evidence-base.Digital storytelling (DST) offers the potential to be one such method. Digital stories are short first-person videos that tell a story of great significance to the creator. The method has already found a place within public health research and has been described as a useful, emergent method for community-based participatory research.MethodsThe aim of this study was to explore Māori participants’ views on DST’s usefulness, from an Indigenous perspective, as a research method within the discipline of palliative care. The digital storytelling method was adapted to include Māori cultural protocols. Data capturing participant experience of the study were collected using participant observation and anonymous questionnaires. Eight participants, seven women and one man, took part. Field notes and questionnaire data were analysed using critical thematic analysis.ResultsTwo main themes were identified during analyses: 1) issues that facilitated digital storytelling’s usefulness as a research method for Māori reporting on end of life caregiving; and 2) issues that hindered this process. All subthemes identified: recruitment, the pōwhiri process, (Māori formal welcome of visitors) and technology, related to both main themes and are presented in this way.ConclusionDigital storytelling is an emerging method useful for exploring Indigenous palliative care issues. In line with a Health Promoting Palliative Care approach that centres research in communities, it helps meet the need for diverse approaches to involve underrepresented groups.

PA12 Is digital storytelling ka pai for new zealand maori? using digital storytelling as a method to explore whanau 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.

Providing Post-treatment Support in an Outpatient Alcohol and other Drug Treatment Context: A Survey of Client Opinion

This paper presents findings from a survey that sought the post-treatment support preferences of a group of outpatient alcohol and other drug treatment clients. The client group (n = 83) were presented with six possible models of post-treatment support and were asked to express their level of interest in using or receiving each model and, if interested, by what means they could best be provided. The six models included a range of pro-active (service initiated) and passive (client initiated) support services, variously accessible by telephone, mail, text-message, computer or in-person. Participants were also afforded an opportunity to identify alternative approaches. The results suggest pro-active telephone- and mail-based approaches to post-treatment support are favoured over passive in-person approaches and that computer and text-message approaches (whether passive or pro-active) may be least favourable in the contemporary environment.

Providing Post-Treatment Support in an Outpatient Alcohol and Other Drug Treatment Context: A Qualitative Study of Staff Opinion

This paper examines the post-treatment support practices, attitudes and preferences of outpatient alcohol and other drug (AOD) treatment staff as well as perceived barriers to implementing a post-treatment support service in an outpatient AOD treatment context. Data were collected via semi-structured interview and group discussion (n = 23). Findings suggest that post-treatment support was rarely provided by participating AOD treatment staff or their respective services. However, there was widespread support for implementing such services, and it was generally believed that implementation would be most successful if: multiple post-treatment support options were made available; if one or more of these options were based on the maintenance of an established client/clinician relationship; and if one of the options involved proactive (service-led) telephone support. A number of barriers to possible implementation were identified, although none were considered insurmountable.

Cultural health literacy: the experiences of Māori in palliative care:

Abstract: Health literacy is a concept that is frequently applied to the patient’s ability to find and comprehend health information. However, recent literature has included the skill of the health professional and the accessibility of health resources as important factors in the level of health literacy achieved by individuals and populations. In 2014 a qualitative study undertaken in Aotearoa New Zealand, investigated the context of health literacy for Māori in a palliative care setting (Māori are the indigenous people of Aotearoa New Zealand). The study included the experiences of patients, whānau (families), and health professionals. Method: Individual semi-structured interviews were held with 21 patients, whānau and six key informants: a medical specialist, a service leader involved in developing culturally specific responses to patients, two Māori service managers, and two Māori health team leaders. Focus groups were held with a total of 54 health professionals providing palliative care services. Data analysis: A thematic analysis was undertaken using a general inductive approach. The trustworthiness and reliability of the analysis was supported by sharing analysis of the transcripts among the research team. Member checking or respondent validation was used in seeking confirmation of the interim findings at five hui (meetings) with the research communities involved. Findings: This study found that the shock and grief that attends a life-limiting illness made hearing and processing health information very difficult for patients and whānau. Further, ‘hard conversations’ about moving from active treatment to palliative care were often avoided by health professionals, leaving patients and whānau distressed and confused about their choices and prognosis. Finally, poor cultural health literacy on the part of organisations has likely impacted on late access to or avoidance of palliative care for Māori.

Caregivers for people at end of life in advanced age: knowing, doing and negotiating care

Background the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3-6 months after an older persons death and invited to take part in the current study. Subjects fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Māori and 32 non-Māori. The majority of the 58 carers were in their 60 s and were women. Methods guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within the transcripts, and feedback and discussion with participants. Results we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.