Digital methods in caregiving research

Today I was honored to receive the 2021 Innovative Contribution to Family Nursing Award from the International Family Nursing Association (IFNA). I joined IFNA in 2015 and attended my first International Family Nursing Conference that year in Odense, Denmark. Since 2016, I have been a member of the IFNA Communications Committee and currently serve as co-chair, as well as editor of the IFNA blog. With members of the Communications Committee, I co-presented a workshop on the use of social media to advance family nursing at IFNC13 in Pamplona, Spain. At IFNC14 in Washington, DC, I led and co-presented a workshop on innovative methods for data collection in family caregiving research, focusing on the use of digital methods to expand family nursing and family health research.

The award is in recognition of my “innovative contributions to family nursing and family health related to…leveraging of digital research methods to explore family health.” I appreciate the recognition of this work as its value was not always seen. I’ve written before about some of the perceptions I faced regarding how those of us who are not nurses can contribute to family health. Similar perceptions initially applied to the work for which I am honored with this award. I was told “this won’t take you anywhere.” Detractors said my idea of using the Internet, particularly social media, to understand family caregiving wouldn’t work because they assumed caregivers and older adults didn’t use social media. And even if they did, what could be gained from such an analysis? But I persisted because I knew their assumptions about who caregivers are and how they use technology were not based on the evidence.

Over the last several years, I’ve led world-first research using digital research methods in the field of caregiving in dementia. The majority of this work has centered around an examination of blogs written by family caregivers of people with dementia to characterize the family caregiving experience, offering new, person-centered insights to drive the development and testing of novel interventions and services. It started with a paper on how and why caregivers of people with dementia use their blogs. Other papers have focused on how caregivers practice self-care and the nonpharmacological strategies they use to provide care. The use of these digital methods offers a window into the caregiving experience unmatched by more traditional research methods, allowing my colleagues and me to examine sensitive topics among caregivers, such as suicidal and homicidal ideation. My colleagues and I continue this digital work regarding how and why people with dementia and their families use social media to understand ways in which family nursing and family health researchers might provide support to these families. The latest papers focuses on dignity in dementia caregiving and caregiving at end of life. Over time, I’ve garnered an international reputation for this social media-focused work, providing me with the opportunity to guest lecture and offer research consultation on digital research methods at the University of Exeter in the United Kingdom and the Centre for Age-Related Medicine in Stavanger, Norway. And I’ve been lucky to work with early career researchers on identifying people with dementia on Twitter and understanding how they use this platform.

In addition to my use of social media data, I use digital research methods to recruit and collect data among populations considered hard to reach or “hidden,” specifically sexual and gender minority caregivers of people with dementia. My work has demonstrated that sexual and gender minority adults more frequently use the Internet to seek health information than their heterosexual counterparts. Taking advantage of this insight, my recent research study funded by the National Institute on Aging used digital methods to collect data via social media-based recruitment targeted toward self-identified sexual and gender minority caregivers of people with dementia. These methods increased accessibility and reduced exclusion of rural caregivers or caregivers with fear of discrimination, thereby broadening the understanding of the sexual and gender minority caregiver experience. Additionally, because social media platforms are used by a diverse population in terms of age, race, and ethnicity, this approach enhanced our ability to recruit a diverse sample, exceeding recruitment goals in terms of race and ethnicity. Findings from the studysignificantly extend what is known about sexual and gender minority caregivers of people with ADRD, providing unique data about this under-researched population and laying the groundwork for future research to support this caregiving population.

Finally, through my engaged scholarship approach to my program of research, I disseminate these innovative research strategies to enhance family nursing and family research, education, and practice through social media and traditional scholarly dissemination. My active presence as a family health scholar on social media ensures that family health content spreads globally to a broad and diverse network of professionals and, most importantly, families. That’s what is most important to me—putting information into the hands of caregivers. Social media is an excellent tool for that, and I’m always heartened when a caregiver reaches out to me via Twitter to share their story or seek resources. Helping caregivers is why I do what I do and awards like this help to present more opportunities for me to do so. 

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