Increased cancer prevalence and survival rates coupled with earlier patient discharges from hospitals have created a greater need for social support. Cancer care is both short term and long term, requiring acute treatments, treatments for remission, and long-term screenings and treatment regimens. Health care systems are already overwhelmed and often struggle to provide social support systems for everyone. Caregivers are limited in number, and even when they are available, they often lack necessary information, skills, or resources to meet the needs of patients with cancer. The act of caregiving presents various challenges, and caregivers themselves often need social support as well. Despite these needs, most social support programs are targeted toward patients alone. Given the prevalence of cancer and known needs of these patients and their caregivers, the ability to identify those who need social support is crucial. Further, the scalability and overall availability of social support programs is vital for successful patient care. This paper establishes the benefits of social support for both patients and caregivers coping with cancer treatments, explores innovative ways of identifying patients who may need social support using digital tools, and reviews potential advantages of digital social support programs.
Background: Self-injection of biologics is a mainstay of chronic disease treatment, yet the process of self-injection often causes persistent apprehension and anxiety, distinct from needle phobia. While literature alludes to the role that routines and rituals play in self-injection, there is no comprehensive study on the routines and rituals self-injectors employ, nor of the process by which they are discovered and ingrained. Methods: We conducted a mixed-method, observational pilot ethnography study of 27 patients with plaque psoriasis, psoriatic arthritis, or ankylosing spondylitis with and without prior biologic self-injection experience. Patients submitted self-made videos, photos, and projective exercises of an actual biologic self-injection and completed validated instruments to assess burden of treatment. Videos and photos containing routine and ritual elements were thematically categorized based on functional and emotional benefit, and analyzed for differences based on current biologic, dosing frequency, time on current biologic, and burden of treatment measures. Results: During patients' initial at-home injections, training gaps became apparent, leading to a process of experimentation aimed at reducing pain/anxiety, increasing confidence, and building a consistent injection process. Routines were present in 27/27 (100%) patients and anchored the time, place, and process for injection, and incorporated approved use steps for the injection device. Ritual elements served as emotional coping strategies for patients and were present in 21/27 (77.8%) of patients. Conclusion: Our findings suggest that providing patients device training using adult learning principles, teaching routines and rituals concurrently, and providing at-home opportunities for practice with a device trainer may be useful strategies to reduce anxiety, avoid unnecessary experimentation, and improve adherence to injection therapy. While further studies are needed to generalize our findings, we posit that routine and ritual elements can be incorporated into existing patient-clinician interactions or novel digital interventions through mobile medical applications, smart training devices, and connected injection ecosystems.
UNSTRUCTURED Increased cancer prevalence and survival rates coupled with earlier patient discharges from hospitals has created a larger need for social support. Cancer care is both short-term and long-term, requiring acute treatments, treatments for remission, and long-term screenings and treatment regimens. Healthcare systems are already overwhelmed and often struggle to provide social support systems for everyone. Caregivers are limited in number, and even when they are available, they often lack necessary information, skills, or resources to meet the needs of patients with cancer. The act of caregiving presents various challenges, and caregivers themselves often need social support as well. Despite these needs, most social support programs are targeted toward patients alone. Given the prevalence of cancer and known needs of these patients and their caregivers, the ability to identify those who need social support is crucial. Further, the scalability and overall availability of social support programs is vital for successful patient care. This paper establishes the benefits of social support for both patients and caregivers coping with cancer treatments, explores innovative ways of identifying patients who may need social support using digital tools, and reviews potential advantages of digital social support programs.
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