The motivation behind this project is attributable to advancements in technology that have created new means of self-expression and communication using online social networking. Throughout my clinical experiences, I have observed the importance of engaging with patients to gaze beyond their current illness and learn about their story. I found these interactions to be powerful to help build rapport with patients and improve their ability to cope with their current predicament. Therefore, for this project I thought it would be interesting to explore how technology has created a new means of self-expression for patients who are suffering from persistent illness and their families or support networks.
Persistent illness challenges a patients’ identity, as they are no longer ‘able-bodied’ or capable of performing at a level that is desirable, or needed to accomplish their life goals (Deborah & Mary Ann, 2003). These patients are observed objectively by health care professionals to analyze their physical health. However, their subjective illness experiences are hidden from view and can only be shared through various forms of the patient narrative, which is a medium for patients to explain and make sense of their illness (Deborah & Mary Ann, 2003). Thus, through the narrative patients’ are able to be heard, are capable of rediscovering their self-meaning, and can validate their illness experiences (Deborah & Mary Ann, 2003). This is possible as a narrative gives control back to the patient, and they are able to dictate which areas are relevant to them at that time and require further discussion (Deborah & Mary Ann, 2003). In the past, a patients’ narrative was primarily shared with people in their family, support network, and their health care professionals. Other mediums of communication may have been through newspaper articles, or possibly books. However, with the growth of social media on the internet, many patients have utilized this new medium to reach out to a large population with their narrative. For instance, this new technology enables patients to share their illness experiences in multiple creative formats, with many patients and their families who may be undergoing similar health care challenges, or to connect with the general public, which may raise awareness about to their issues. For example, patients have created videos, artwork, blogs or other forms of self-expression on the internet, to educate others about their illness experiences
Technology has also opened up avenues for patients and their families to access or record their medical data, improve entrée to health related knowledge to progress their understanding of their health care experiences, and facilitate the creation of online support networks to enhance communication with others who are undergoing similar conditions. A pilot study by Torp et al. (2008) found that information technology had a positive effect on the caregivers’ of patients with chronic illnesses, social networks as they were able to connect with other caregivers who were in similar situations. These communications were able to facilitate informational, instrumental, and emotional support amongst caregivers (Torp, 2007). In addition, this intervention promoted enhanced control over their situation, as they were able to gain further knowledge about their loved ones illness through online discussion, and discover more resources like financial support or assistive services, which enhanced their ability to cope with the stressors associated with care giving (Torp, 2007). Enhanced coping is significant as we have discussed previously the potential negative health consequences of caregiver burden on the mental health of caregivers who are caring for patients who are chronically ill (Hickman Jr & Douglas, 2010). Secondly, information technology has been found to improve illness ownership, as patients feel more capable of influencing their own care due to increased awareness of their medical records (Winkelman, 2005). Some patients have found that their own interpretation of their illness experience often differs from their physicians’, hence being able to document their individualized perspective increases a sense of ownership over their health care (Winkelman, 2005). Therefore, online information technology has demonstrated potential to improve patient-centred or family-centred care, as patients are able to play a larger role in their health care, and these services may help alleviate stress in their caregivers.
In summary, the benefits of technological advancements are multifaceted, as they advance the capability of patients to share their narratives, enable patients to regain control over their situation, improve access to knowledge about their illnesses, and facilitate connection with others who are facing similar health challenges. My primary objective of this project was to create an online blog to demonstrate the capacity of this medium for self-expression through patient narratives, and to explore the ease of ability to access resources to improve the health and well being of patients and their families. Through this exploration, I asked myself several questions and attempted to find answers that I thought would be relevant for someone who is suffering from chronic illness, or their caregivers. For instance, how can technology improve my ability to: connect with others to learn about their experiences? Ask health related questions? Access new research or treatments related to my illness? Make health related decisions? Enhance my quality of life? Translate my medical data to a means that is understandable to me? I was able to locate a plethora of free resources that answered these questions, or demonstrated the potential of technology to help answer these issues in the future. This project has expanded my knowledge about the capabilities of the social media platform beyond programs like Facebook, to health related resources like Patients like me. I feel there is an issue with invisibility of these resources, as I was unaware of their existence until I was searching for them. Hence, one issue will be to try to improve awareness of these resources for health care providers, patients, and their families. This is a ripe area of study that is evolving at a rapid pace, possibly faster than research may be able to keep up with. Thus, it may be up to the patients and their families to decide what resources best suits their needs to help improve their health and well being during their illness experience. Finally, from this project, I have learned how accessible this medium is, as it did not require advanced computer skills to create a blog, and it was free. Therefore, this project will influence my practice as I am now aware of resources that may help patients and their families cope with persistent illness, and I will make it part of my practice to communicate about these resources to improve access. References
Deborah, D., & Mary Ann, M. (2003). Illness stories. Social Work in Health Care, 37(1), 19-39.
Hickman Jr, R. L., & Douglas, S. L. (2010). Impact of chronic critical illness on the psychological outcomes of family members. AACN Advanced Critical Care, 21(1), 80.
Torp, S. (2007). A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway. Health and Social Care in the Community, 16(1), 75. doi:10.1111/j.1365-2524.2007.00725.x
Winkelman, W. J. (2005). Patient-perceived usefulness of online electronic medical records: Employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. Journal of the American Medical Informatics Association, 12(3), 306.