Let’s look at the brighter side19 June 2020
The Story for Current and Future Caregivers
By Milica Petrovic Published 29.03.2020
In the amazing sci-fi novel, The Hitchhiker’s Guide to The Galaxy by Douglas Adams, the earthman Arthur Dent is being rescued, from the end of the planet Earth, by his alien friend Ford Prefect. Ford sneaks Arthur into a spaceship and they hitch a ride right into the adventure. However, not long before Arthur realized that the planet was about to come to an end, he was living a personal drama. Moments earlier, Arthur found himself protesting by laying down in front of a yellow bulldozer that was about to tear his house down. Throughout numerous bureaucratic procedures, Arthur failed to be informed about the upcoming bypass planned in the area, finding his house exactly in its way.
In the meantime, his alien friend Ford is counting minutes in the bar until the aliens Vogons arrive to destroy the Earth over a planned space bypass. All this drama happens simultaneously, on two different levels, while people on Earth remain oblivious to both. It is Ford who drags Arthur away from an enormous bulldozer, brings him into the bar, and announces that the planet is about to come to an end. Symbolically, Ford Prefect acts as a voice of reason, which Arthur is unable to hear. This voice of reason is what every single one of us sometimes needs.
It is only when Arthur is finally being able to see the macro scale of the real problem that he understands how small his own problem was.
Ford Prefect represents a hero, appearing at the right time, bringing Arthur back to his senses and then saving him. In a sense, Ford is a hero that we often seek.
As noted by Swiss psychiatrist and psychoanalyst, Carl Jung, the hero in the story symbolizes the unconscious self. Using a heroic journey for a structure of the story, as argued by Joseph Campbell who is the author of The Hero with The Thousand Faces, helps us easily relate and immerse in a story. Becoming a hero through personal pain and struggle, as Jonathan Livingston Seagull did, in a fable in novella form by Richard Bach, is a narrative we all love to see. Richard Bach teaches us that in order to be someone's hero, we must become our own first.
It is the quest of a hero that makes the stories special, finding our place in the world by bravely leaving the comfort and security, accepting the unknown and making it our own story.
It is exactly those personal stories we live by that make us who we are and create our identity or the narrative of our life. The importance of personal stories and how we see “the self” has been emphasized in recovery and therapy more than any other area. For example, the recovery from a substance, addiction, trauma, and loss of a significant other revolves around personal stories and narrative shift. Before the recovery begins, the one being hurt must feel as the one able to recover and own the story of his life. In group therapies, everyone gets the chance to share their story and hear the stories of others which in turn brings relief. The sense that we shared the story of our life, despite the fact we see ourselves as heroes or villains has the potential to heal and change us. In fact, the entire field of narrative psychology is deeply involved with the stories we tell and live by.
Even the extreme events, such as the near-death experiences, are often described by the survivors as seconds in which their entire life story unfolded like a film roll, and had a transformative impact by changing their life course.
In an informal caregiving environment, caregivers are faced with duties and difficulties that take up most of their daily time. For instance, caregivers experience depression, stress, anxiety, fatigue, and burden that is frequently taking a form of anger or arguments with care recipients. Feelings of despair and even resentment towards the care situation are not unlikely and in many cases physical manifestations of psychological conditions appear.
Common health consequences caregivers face revolve around the situation that emotionally or physically becomes difficult for the caregiver. These situations might include a conflict about care, lack of support, life balance, financial concerns and exposure to the suffering of a loved one. Informal caregivers usually become one unexpectedly, either due to a sudden accident, illness, or stroke.
In Parkinson’s or Alzheimer’s disease the caregiver role is perhaps less sudden but progressively more intense. Caregiving creates a conflict between the lifestyle of a caregiver and the changes that must take place to incorporate caregiving in everyday life. The event itself, sudden or gradual, requires a lot of change that may range from changing or quitting one’s job, to completely changing and readjusting one’s life. A required adjustment may vary from role shift on a personal level such as from a spouse into a caregiver or from a daughter into a caregiver, to a professional level from employed to unemployed caregiver. All of these changes, affecting mental and physical wellbeing of a caregiver, also deeply disturb the dynamics and a story of oneself by creating the gap between how things should be and how things actually are.
Healing the Self Requires a Meaning-making and Comprehensive Story
Providing a comprehensive story of oneself that can be experienced through video storytelling is a potential digital solution for addressing the identity and coping mechanisms that caregiver develops throughout the role itself. This approach can incorporate caregiving as a familiar experience into a narrative identity, redefine the role, and the ways individuals find and define themselves in it. It allows caregivers to encounter most usual caregiving scenarios originating from the scripted stories designed together with the caregivers, in the form of a video story.
Video storytelling engages the senses and provides the opportunity to relate with a personal narrative on a deeper level while finding meaning and transforming the narrative into a coherent story of oneself. As indicated in a study by Smyth and colleagues (2001), participants who were instructed to form a narrative out of the traumatic or difficult events showed improvement in health indicators while the rumination about trauma was reduced. Participants formed a narrative with the beginning, middle, and an end while including all the circumstances, consequences, and solutions that allowed them to form a cohesive story as an outcome.
These findings point out the importance of understanding the development of our story and accepting it as a part of the personal narrative. Moreover, this shows that gaining a bird's-eye perspective over a personal story can change the understanding of the story.
The research revealed that the sole expression of thoughts and feelings was not sufficient for any therapeutic benefit, but that the well-structured story is necessary.
Development of a coherent and forward-moving narrative for the caregivers where they can still see their growth and development even in the circumstances not willingly chosen is a crucial part of a personal meaning-making process necessary for the personal identity. If people remain distressed about a traumatic event, memories do not integrate into their narrative.
In fact, these memories remain in a form of disorganized sensory perceptions, and obsessive or impulse behaviors. In other words, if a caregiving experience is recognized as a sudden, unwanted and traumatic change for the family caregivers such as a spouse, partner or children, the experience will never be integrated into a personal narrative but completely rejected or dissociated from the personal story of oneself.
Video storytelling is being developed as a part of ENTWINE project as a well-structured narrative of a caregiving experience. It is built as a simulation of individual caregiving experience designed and presented in an interactive video form, engaging the senses and tackling emotions. This will enable caregivers not only to experience the narrative of their caregiving role but also interact, relate, and shift the storyline while exploring the outcomes of the story based on their choices of actions and responses to challenging events. It gives an opportunity to access the alternate realities of a caregiving story, readjust the narrative of a personal story and transform the personal caregiving experience itself. Transformative video storytelling for caregivers, widely accessible, and available over multiple platforms, on your mobile phones, tablets, laptops, and computers, is one of the advanced next step solutions in digital therapy and digital health for caregivers.This technology will allow caregivers to interact with stories and gain skills and knowledge necessary to transfer and apply the video story into a real caregiving situation. It can be viewed as a training environment where certain responses, reactions and coping mechanisms are learned and exercised. The video storytelling will help caregivers by providing skills necessary to continue working on building and developing the self even after the intervention has been completed allowing them to recreate their caregiving situation in a more positive manner.
Angus, L. E., & Greenberg, L. S. (2011). Working with narrative in emotion-focused therapy: Changing stories, healing lives. American Psychological Association.
Angus, L. E., Lewin, J., Bouffard, B., & Rotondi-Trevisan, D. (2004). What’s the story?”: Working with narrative in experiential psychotherapy. The handbook of narrative and psychotherapy: Practice, theory, and research, 87-101.
Butcher, H. K., & Buckwalter, K. C. (2002). Exasperations as blessings: Meaning-making and the caregiving experience. Journal of Aging and Identity, 7, 113-132.
Crawford, R., Brown, B., & Crawford, P. (2004). Storytelling in therapy. Nelson Thornes.
J.Luren Johnson, Joshua L. Cohen, Penny Orr. (2015). Video and Filmmaking as Psychotherapy: Research and Practice.
R. Bach. (1970). Jonathan Livingstone Seagull
Is a researcher and a PhD candidate at the UCSC in Milan, working on transformative interactive video storytelling as a means for structuring sudden and unexpected life changes into a meaningful story of oneself. Currently developing video storytelling for informal caregivers as a tool that will help people integrate caregiving roles into a cohesive narrative of the self.
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