Social media and peer-to-peer support for individuals with health care needs and their caregivers: a scoping review (Preprint)

2019 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Health Care ◽  
Social Media ◽  
Peer Support ◽  
Scoping Review ◽  
Emotional Support ◽  
Peer To Peer ◽  
Health Care Needs ◽  
Care Providers ◽  
Care Needs ◽  
The Many

BACKGROUND Individuals with health care needs and their caregivers require substantial informational and emotional support. Providing this support is a major challenge for care providers, who are often not able to adequately address barriers and may not be aware of available services and programs. Online P2P support offers an accessible and inexpensive source of support; however, the breadth of these supports on social media has not been previously documented. OBJECTIVE This study was a scoping review of research examining the use of peer-to-peer support on social media by individuals with health care needs and their caregivers. METHODS This review used the PRISMA-SR method to search for articles from 1997 to 2019. RESULTS A total of 94 articles were included. Patients and caregivers use many social media websites for P2P interaction, including: Facebook (n = 19), Twitter (n = 7), and YouTube (n = 6). Providing and receiving informational and emotional support were important uses of social media for P2P support; however, the specific needs and experiences of patients and caregivers appeared to change as knowledge regarding the condition(s) improved. Despite the many benefits associated with participating in online P2P groups, concerns related to ethics, privacy, and the potential to spread misinformation are outlined as risks associated with its use. CONCLUSIONS This study revealed that patients and caregivers engage in P2P support on social media to receive informational and emotional support from peers, despite known risks and limitations. Social networking websites were revealed to be particularly suited for P2P support communication.

scholarly journals From virtual to real healing: a critical overview of the therapeutic use of virtual reality to cope with mourning

2021 ◽  
Author(s):  
Silvia Francesca Maria Pizzoli ◽  
Dario Monzani ◽  
Laura Vergani ◽  
Virginia Sanchini ◽  
Ketti Mazzocco
Keyword(s):  
Health Care ◽  
Social Media ◽  
Virtual Reality ◽  
Side Effects ◽  
Virtual Environments ◽  
Therapeutic Use ◽  
Health Care Needs ◽  
Care Needs ◽  
South Korean ◽  
Critical Overview

AbstractIn recent years, virtual reality (VR) has been effectively employed in several settings, ranging from health care needs to leisure and gaming activities. A new application of virtual stimuli appeared in social media: in the documentary ‘I met you’ from the South-Korean Munhwa Broadcasting, a mother made the experience of interacting with the avatar of the seven-year-old daughter, who died four years before. We think that this new application of virtual stimuli should open a debate on its possible implications: it represents contents related to grief, a dramatic and yet natural experience, that can have deep psychological impacts on fragile subjects put in virtual environments. In the present work, possible side-effects, as well as hypothetical therapeutical application of VR for the treatment of mourning, are discussed.

scholarly journals Disparities in Shared Decision Making and Service Receipt Among Children With Special Health Care Needs and Developmental Delay: A National Survey Analysis

2020 ◽  
Vol 11 ◽  
pp. 215013272092458
Author(s):  
Monica Perez Jolles ◽  
Leah L. Zullig ◽  
Pey-Jiuan Lee ◽  
Gauri Kolhatkar
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Service Use ◽  
Special Health Care Needs ◽  
Shared Decision ◽  
Health Care Needs ◽  
Care Providers ◽  
Care Needs ◽  
Special Health Care ◽  
Special Health

Shared decision making (SDM) is associated with increased service satisfaction among pediatric patients. Our objective was to examine the association between SDM and service use experiences across racial/ethnic child groups. This secondary data analysis used the 2009-2010 National Survey of Children with Special Health Care Needs (CSHCN) and 2011 Pathways to Diagnosis and Services Survey. We used a rank-and-replace matching approach consistent with Institute of Medicine recommendations for health disparities research. We included CSHCN aged 6 to 17 years. The exposure of interest was parents of CSHCN reporting engagement in SDM with clinicians. There were 4032 CSHCN included in analysis. CSHCNs experiencing SDM had a 16% higher probability of reporting service use compared to those not experiencing it (95% CI, 14.24-19.42). Black children experiencing SDM reported seeing all needed care providers at a lower rate than whites (79% and 87.6% respectively; 95% CI, -14.05-3.27). The benefit of SDM over not experiencing it for blacks was 12.2% less than for whites for the outcome of seeing all needed care providers. For the outcome of receiving all needed treatments and services, the SDM benefit was 9.1% lower for Hispanics compared with whites. SDM can improve service experiences but implementation flexibility may be needed.

scholarly journals Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada (Preprint)

2021 ◽  
Author(s):  
Amanda D Santos ◽  
Vera Caine ◽  
Paula J Robson ◽  
Linda Watson ◽  
Jacob C Easaw ◽  
...  
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Clinical Information ◽  
The United States ◽  
Patient Portal ◽  
Health Care Needs ◽  
Care Providers ◽  
Patient Portals ◽  
Care Needs ◽  
Oncology Patients

BACKGROUND With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients’ experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits. OBJECTIVE The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta’s unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. METHODS This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board. RESULTS Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta’s patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants’ broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient–provider relationship. CONCLUSIONS Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them.

Piloting a structured developmental tool to assess transition readiness for youth with special health-care needs: A mixed-methods exploration of health-care provider experiences

2019 ◽  
Vol 24 (1) ◽  
pp. 92-105
Author(s):  
Judy Bond ◽  
Susan Shanske ◽  
Roberta Hoffman ◽  
Abigail M Ross
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Patient Care ◽  
Special Health Care Needs ◽  
Health Care Needs ◽  
Care Providers ◽  
Care Needs ◽  
Special Health Care ◽  
Transition Readiness ◽  
Special Health

This mixed-methods study examined providers’ experiences using a structured developmentally sensitive tool to assess transition readiness for youth with special health-care needs moving from pediatric to adult care. Twenty-eight health-care providers from three pediatric specialty clinics reported their experiences using the tool by surveys and semistructured telephone interviews. Qualitative data were analyzed using thematic analysis. Most (96%) believed routine practice should include a structured tool; 65.7% incorporated information from the tool into patient care plans. Salient themes pertained to practice behavior changes and implementation barriers. Integrating structured tools into standard clinical practice has the potential to optimize transition and improve patient care.

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