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With somewhat concerned attention, I have born witness to the “explosion” of online grief support programs and apps that have made their debut in recent years. Just a few days ago, I received a note from a colleague in  funeral service telling me of another “app” for grieving people his firm was invited to purchase as a major cornerstone in its “aftercare program.” Undoubtedly, some of these are designed to provide great support and I don’t doubt they could prove important as an adjunct to good bereavement work. Nevertheless, I have both my doubts and my fears about these programs and I will tell you a bit more about my misgivings and what I think we can do about these concerns.
Online or video-based bereavement support is nothing new. There have been video series on grief available since the days of the Betamax and VHS tape (ok, readers under 30 will have to ask an older colleague to explain!) and truth be told, probably from the days of actual reel-to-reel audio and film recording. With the inexpensive reproduction available with CDs and DVDs organizations with even very limited budgets found the series more affordable. Now that YouTube and other online video platforms have become ubiquitous in the market, it seems everyone is recording 10-minute “snippets” of advice for bereaved people; I have even recorded a few for professional colleagues myself, though I have personally chosen to stay away from the “direct-to-griever” market.
Faith communities were the first place I saw these recorded programs rolled out as pre-packaged bereavement programs and I have met countless volunteers across North America who tirelessly lead these seven, ten, and thirteen-week groups in their congregations. The production value is often “slick” and the personal stories shared by grieving people are often quite compelling. In some of the series, viewers are treated to rather “triumphalist” stories that model a life after grief as individuals report how their faith, or their desire to “not wallow in grief,” or their renewed purpose, or their dogged determination got them through the throes of loss. Frequently these stories are accompanied by the admonitions of self-described “experts” who offer that this strategy or that plan has a helpful place in healthy grieving.
 This might all be well and good. Or, this could be harmful. The greatest harm, in my estimation, is the belief that seems implicit in many of these videos—and now online programs and apps—that the journey through grief is primarily mediated through correct information. Now certainly, sometimes the information offered in these programs is blatantly wrong. For example, leading bereavement clinicians and scholars have not used stage models to talk about the bereavement process in more years than I can remember but some of these online programs actually still talk about Kubler-Ross’ five stages as if it was this morning’s news. This is not only wrong; it is potentially harmful to bereaved people in ways that are well articulated in a recent paper in Omega by Margaret Stroebe, Henk Schut, and Kathryn Boerner, leading voices in bereavement today (Stroebe, et.al., 2017).
A couple with whom I was working through the dying of their toddler and the grief that followed happened upon one of just such programs that came in a pre-packaged “system” via the funeral home that had served them. The dad, who had learned quite a lot about grief during the two-year illness of their child, literally “hit the ceiling” at the misinformation provided; I reviewed the piece in question and had to conclude the dad was right in his assessment. He had already communicated with the funeral firm’s owners his aghast sense that they were providing such blatantly wrong information and the funeral home eventually cancelled the contract with the online provider in question. The information was, at best, misleading, and at many turns, completely opposite of what we understand to be true about bereavement today.
Researchers in Australia have been engaged for several years in a study to better understand the role of social support for bereaved individuals in a community based sample. In their most recent publication, this team reported that social support from one’s own network and from created networks such as bereavement support groups was useful, dividing the kinds of support into four types: instrumental, emotional, informational, and appraisal support, th ough informational support received was of mixed helpfulness (Aoun, et.al., 2018). Help with practical tasks (instrumental support), non-judgmental listening presence (emotional support), and ability to compare stories with other similarly bereaved persons (appraisal support) were generally regarded as helpful by these respondents. The results of this study might help explain the observation I made a few years ago (Hoy, 2016) that bereavement groups should be mostly about directed sharing of stories, perhaps punctuated by brief presentations (2-5 minutes) about content. In other words, the best bereavement support does not seem to be about the content but rather about the mutual support.
In a culture with widespread misunderstanding about grief, certainly some informational support is helpful. Brief informational pamphlets, for example, were named by respondents in the Aon, et.al (2018) study as useful for helping them understand better what to expect. My experience is these must be simple, straightforward presentations of content that do not “unload” too much information at one sitting. A single page or a tri-fold layout seems preferable to multi-page booklets and longer books. Readers can find links to just some of these materials in the resource section below.
Though based only on my own anecdote, of course, and lacking the empirical rigor of some of the studies on bereavement support referenced here, I have noted for years that bereaved people tend to be complimentary of brief materials I have written while caregiving colleagues tend to be more complimentary of my books and longer documents. In other words, we professionals seem to prefer wordy detail and bereaved individuals might seem to prefer materials that quickly “get to the point.”
One dilemma with video-based programming for bereavement groups is that it provides so much content that significantly distressed persons cannot simply take it in. Therapists have observed this in our own practices: rarely can a patient/client hear a presentation of facts or concepts that runs for several minutes or that include several points or sub-points; the amount of data is simply overwhelming. Rather, bereavement group leaders would do  well to make an opening statement of a few sentences, drop in a sentence of two stated as principles as they emerge in the dialogue of a group meeting, and then offer a summary statement at the end.
In the context of these and other findings as well as a mountain of clinical experience shared among caregiving professionals and volunteers, bereavement support is not “rocket science.”
References.
Aoun, S.M., Breen, L.J., Rumbold, B., Christian, K.M., Same, A., & Abel, J. (2018). Matching response to need: What makes social networks fit for providing bereavement support? PLoS ONE 14(3): e0213367. doi: 10.1371/journal. pone.0213367
Hoy, W.G. (2016). Bereavement groups and the role of social support: Integrating theory, research, and practice. New York, NY: Routledge.
Stroebe, M., Schut, H., & Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. Omega: Journal of Death & Dying, 74(4), 455-473. doi: 10.1177/0030222817691870
The Author: For more than three decades, William G. Hoy has been counseling with the bereaved, supporting the dying and their families, and teaching colleagues how to provide effective care. After a career in congregation, hospice, and educational resource practice, he now holds a full-time teaching appointment as Clinical Professor of Medical Humanities at Baylor University in Waco, Texas.
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