Article Authored By: Theresa Dirndorfer Anderson & Ina Fourie

Reviewed by: Sandra Albini, Sienna Crespin, Christopher Eaton, Daisy Gutierrez & Thomas Rubenstein

Link to article: http://informationr.net/ir/20-1/isic2/isic33.html#.X5oWHlNKjJ-

Introduction:

Caring for a person diagnosed with chronic or life-threatening illnesses is a demanding, emotionally intensive job. Corresponding information behaviors (such as seeking information on the illness and searching for proper healthcare) are fundamental components of caregiving, and accordingly as Theresa Dirndorfer Anderson and Ina Fourie point out, there has been much research into the confluences of information sciences and caregiving. Dirndorfer Anderson and Fourie are information practice researchers who also act as caregivers who have found that despite the numerous scholarly articles written on the subject, there are many questions left unanswered. In their article, “Collaborative Autoethnography as a Way of Seeing the Experience of Care Giving as an Information Practice,” they surmise that researching the topic through the process of storytelling can fill in these holes. Caregiving is a mercurial task with many unexpected twists and turns that sterile scholarship can gloss over. The writing of an autoethnography reveals to both the author and reader the holistic, emotional components of the work and has the potential to reveal much about the convergence of caregiving and information seeking and providing. Through writing this article, Dirndorfer Anderson and Fourie hope to demonstrate to information researchers the value of autoethnographic work in their field and broaden the scope of information sciences around the world.

Core Research Question(s):

What can providers do for people with chronic, life-limiting, life-threatening diseases?
Explain the concept of autoethnography; in what ways can it be used? How can autoethnography address highly sensitive topics such as illness, death, and loss? How is autoethnography an ethnographic type of research? Is it a reflexive methodology; explain how? How does autoethnography and information scholars/or autoethnography and information science intersect? What is the concept of the “individual” experience? How can researchers use ethical storytelling/How can storytelling be an analytical tool? How can using autoethnography through storytelling connect caregivers and people with chronic illnesses/life-threatening diseases? What is the caregiver’s role, and how do they use autoethnography when taking care of people with chronic illness?

Methods Used to Answer the Research Question:

Anderson and Fourie (2014) make use of a technique called autoethnography to both describe and analyze the experiences of those giving care to others with chronic, terminal, or debilitating diseases. This narrative method is centered on the context of the researcher as being both the subject and object of research, as autoethnography is the self-described exploration of a cultural experience. Anderson and Fourie describe the research method as “a systematic and intentional pursuit of an understanding of the self within a socio-cultural context” (paragraph 6). Anderson and Fourie admit that this method, being based upon personal subjective experiences, has questionable qualitative value, but this is countered with the notion that such narrative-based research makes a deeper connection with the reader of the work. Because of the unique perspective and insight gained from autoethnography, Anderson and Fourie argue that this method holds greater power when used in a collaborative fashion. In the context of caregiving, Anderson and Fourie believe collaborative ethnography can reveal new sources of, or encounters with information, novel and multidimensional insights into the act of caregiving, and new knowledge about how various roles interact with one another (e.g., being both a caregiver and information professional and the interactions between them). This is a holistic approach to research that has much to reveal.

Findings and Conclusions:

This article calls for the inclusion of autoethnographic and collaborative ethnographic reports in health sciences literature as they have been generally excluded. The sharing of personal experiences can provide space for caregivers and others to reflect and reinforce the significance of witnessing. This method of narrative storytelling provides an opportunity for deeper understanding within the context of those who work with chronically-ill patients and their loved ones. The only other significant areas that are closely related to collaborative autoethnography are:

1. Drawing on repeated clusters of experience during a life-time or an extended period of life – sometimes with peak moments and critical incidents, and sometimes as part of daily life.
2. Learning how to draw on the right to quality of life and information envisioned for palliative care.
3. Sensitivity for the impact of awareness vs. unawareness.

Including autoethnographic and collaborative ethnographic reports reaches beyond analyzing data. This approach expresses life as a story to be told, respected, and engaged. Ethnography expands research beyond objectivity. In other fields of research, using this approach may also prove beneficial as it places emotional issues in a broader perspective. This method can provide information that has not been researched through traditional approaches.

What American Libraries Can Learn from Global Practice about Designing Services for Diverse Populations:

The experience of Alzheimer’s/ Dementia patrons is multi-dimensional and is not a singular experience that affects only those suffering from the disease. Caregivers are of paramount importance when considering the lived experience of those with Alzheimer’s/ Dementia and the autoethnographic approach offers a unique and creative way to document the experiences of caregivers,while researching ways to best support their community. This form of storytelling that this article promotes can be of great value and benefit when thinking about designing services for diverse populations in the United States. When considering these populations, it is important to remember that the members of the target community each have their own unique stories and perspectives. Just like the Alzheimer’s/ Dementia community, those with diverse backgrounds have no singular narrative that defines who they are and what their needs may be. American libraries would benefit greatly from adapting autoethnographic practices when designing services. It offers a more holistic approach to designing for diverse populations that is lacking in the American library system. With a push toward creating more inclusive and culturally responsive library spaces, the stories of those who are part of the community become incredibly important. Library professionals can read about diverse populations, can hold professional development on how to be culturally responsive librarians, but actually hearing and reading the stories from those within the community can provide an insurmountable amount of information that can guide the type of services offered to patrons.