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

Abstract

Background: The 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. Methods: The 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. Results: Two 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. Conclusion:Digital 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.

Digital Storytelling in Older Adults With Typical Aging, and With Mild Cognitive Impairment or Dementia: A Systematic Literature Review

“…Qualitative studies are mainly devoted to exploring aspects of the use of digital storytelling such as (a) the topic or content of the stories (Castro-Rojas, 2018; H. Davis et al, 2015), (b) strategies used by older adults to gather and choose data and the ethical issues related to dependence on others for support in the processes of digital curation (Manchester & Facer,015), (c) whether of or not the stories were shared (Cueva et al, 2013), (d) the experience with the process of creating the stories (Williams et al, 2017), and (e) the role and functions of the technologies (Pekkarinen, Kuosmanen, et al, 2013). There was minimal detail on the methods used for collecting and analyzing the data; this compromises the credibility, dependability, confirmability, and transferability in most of the papers.…”

Digital Storytelling as a Patient Engagement and Research Approach With First Nations Women: How the Medicine Wheel Guided Our Debwewin Journey

“…Digital storytelling is a participatory arts-based research method (Bennett, 2016;Sitter et al, 2020), which typically involves participants selecting a story that they think is important to share; engaging in group discussions about their stories; writing and recording a narrative; creatively adding multimedia materials to create a compelling, short video; and sharing their video with others (Lambert, 2013;Sitter et al, 2020). In a research study, participants will usually create their digital story in a 2-or 3-day workshop, which includes story circles, and meet with the researcher to talk about the meaning of the story to them (Goodman, 2019;Paterno et al, 2019;Williams et al, 2017). The stories can also be used to share the study findings with patients, health care providers, policy makers, and academics.…”

Place of Strength: Indigenous Artists and Indigenous Knowledge is Prevention Science

“…Indigenous academics and experts converge on the need for an Indigenous research and evaluation framework that centers on core aspects of: relationship and reciprocity (Cajete, ; Smith, ; Walters et al., ); locally specific cultural knowledge, expertise, and control (Hart, ; Walters et al., ); Indigenous values, beliefs, and worldview (LaVeaux & Christopher, ; Roe, Zeitz, & Fredericks, ); decolonization/Indigenization (Smith, ; Walters et al., ); and healing (Brave Heart, Chase, Elkins, & Altchul, ). Specific methods defined as congruent with Indigenous frameworks for research include digital storytelling (Day et al., ; Williams et al., ), photovoice, autoethnography, journaling, and storytelling or other conversational methods (Drawson et al., ). Local methods such as yarning (McKenna & Woods, ; Roe et al., ), talking circles, drumming, prayer songs, chanting, medicine wheel, smudging, and meditation are also specific to Native communities (Drawson et al., ; Kovach, ; Lavellée, ).…”

“…Art has served as a health intervention (Nykiforuk, Vallianatos, & Nieuwendyk, ; Staricoff, ), but, within the framework of participatory research, has also been applied as a method for data collection, analysis, and dissemination (Hammond et al., ; Lafrenière & Cox, ; Wang, Coemans, Siegesmund, & Hannes, ). Art as a research tool, including visual and performative methods, can incorporate marginalized voices, reflect lived experiences, and generate local knowledge in culturally relevant ways (Bergold & Thomas, ; D'Amico, Denov, Khan, Linds, & Akesson, ; Hammond et al., ; McKenna & Woods, ; Williams et al., ). Perhaps most significantly, artistic creations increase accessibility of knowledge production and its benefits within Indigenous communities (Hammond et al., ).…”

“…Further exploration of Indigenous art holds promise in fulfilling Tuhiwai Smith's () research agenda of storytelling, indigenizing, representing, re‐framing, and returning. Native art and artists reclaim the discourse, re‐appropriate representation, decolonize oppressive messages, and produce new knowledge through the use of Indigenous symbology, esthetics, and reproduction of cultural–spiritual practices deeply tied to survivance and sovereignty over the right to govern one's own expression (Farrell Racette, ; Hucko, ; Vizenor, ; Williams et al., ).…”