Scoping Review of Cardiac Congenital Transition Programs: Use of Blogs as an Alternative

Citation:Fredericks, S., Paglia, S., Lamaj, P. (2021). Scoping review of cardiac transition programs: use of blogs as an alternative. Online Journal of Nursing Informatics (OJNI), 25(1), https://www.himss.org/resources/online-journal-nursing-informatics

Abstract

Congenital transition programs (CTP) are designed primarily to assist children living with chronic illness to transition from pediatric health care services to adult-based care. Currently, very little information is known concerning the sustained use and access to congenital transition programs for individuals living with heart disease. This is of importance, as currently, congenital heart disease is the most common form of congenital malformation with about eight in 1,000 of all live births worldwide experiencing some form of congenital heart disease. The purpose of this scoping review was to determine the resources, elements and/or supports that are provided to individuals who use cardiac congenital transition programs; and to identify how these programs are administered. Results indicate all programs were delivered at hospitals or clinics and required multiple visits. Educational, psychological, group therapy, and administrative supports were provided during the various sessions. Additional findings indicate a loss of engagement for participants who were required to travel more than 200 km to access the onsite transition programs; with 90% of individuals requesting transfer-related information using social media forums. Using online blogs to deliver congenital heart disease transition programs was put forward as an alternative to current in-person, onsite programs. This alternative forum for delivery can serve as a medium to enhance management of disease, as well as to enhance the social engagement among patients living with congenital heart disease.

Background

Congenital transition programs (CTP) are designed primarily to assist children living with chronic illness to transition from pediatric health care services to adult-based care
(McAloon et al., 2016). Typically, issues pertaining to risk of infection, introduction of new caregivers, lack of follow-up regarding medical appointments and treatments, and
increased rate of mortality have all been identified as significant challenges faced by individuals transiting from pediatric to adult health care services. The intentions of CTP are to ensure the coordinated and continued delivery of health care services, into the adulthood years, for children and youth living with chronic illnesses (McAloon et al., 2016). Current congenital transition programs focus on diabetes, renal failure, multiple sclerosis, asthma, cancer, heart, rheumatic diseases, cerebral palsy-acquired brain injury, and developmental disabilities (Farmanova et al., 2016). These programs have been evaluated extensively in the literature and are typically characterized by their multidisciplinary focus and empowerment of youth and family to engage in self-care behaviours and in education, counseling, and self-management training (Gray et al 2018; McAloon et al., 2016).

Little information is known concerning the sustained use and access to CTP, specifically for individuals living with heart disease. Currently, congenital heart disease is the most common form of congenital malformation with approximately eight in 1,000 of all live births worldwide experiencing some form of congenital heart disease (GBD 2017 Congenital Heart Disease Collaborators, 2020). These individuals are present in both urban and rural regions of all countries; however, evidence suggests urban dwellers appear to have significantly more access to cardiac CTP than their rural counterparts (GBD 2017 Congenital Heart Disease Collaborators, 2020). Understanding the types of resources/supports that are provided through engagement in these transition programs, as well as how they are delivered, can offer insights into potential solutions aimed at increasing access of CTP across all regions of the globe. The purpose of this scoping review was to determine the resources, elements, and /or supports that are provided to individuals who use cardiac congenital transition programs; and to identify how these programs are administered. The Arksey and O’Malley (2005) framework guided the conduct of this scoping review.  

Identifying and selecting relevant studies

To address the study purpose, a comprehensive and thorough review of the literature was undertaken in which the following electronic databases were searched: CINAHL, Medline, Pubmed, Healthstar, Embase, Web of Science, and Google Scholar; keywords searched were congenital heart disease, congenital cardiac care, transition programs, heart disease programs, method of delivery, urban, rural regions, and congenital transition programs. The search parameters included English articles published in a 25-year period from 1995-2020. Initial search results yielded 1,549 articles. Twenty-one additional sources were identified through hand searching of key journals, searching reference lists, and reviewing existing networks and relevant organizations. After duplicates were removed, 1,206 articles remained, 1,195 articles were screened, and 1,183 articles were excluded as they did not relate to congenital cardiac programs (Figure 1), leaving 12 articles included in the review.

Figure 1 PRISMA Flow Diagram of Search Process

Charting the data

Extracted from the reviewed articles were the following data: design (qualitative – phenomenology, ethnography, grounded theory; quantitative – non-experimental, quasi-experimental, experimental); sampling type (probability, non-probability), sample size, loss to follow-up; occasion of measurement; resources/supports that are embedded within congenital cardiac transition programs; method of administration (face-to-face, online, phone, self-administered); age; gender (male, female); disease presentation (comorbid conditions); and outcome variable.

Collating, summarizing and reporting the results

To date, 12 cardiac CTPs have been described in the literature between the period of 2009-2020 as listed in Table 1. Six of these articles were research studies (Mondal et al., 2020; Werner et al., 2019; Lopez et al., 2015; Clarizia et al., 2009; Mackie et al., 2018; Vaikunth et al., 2018), inclusive of one randomized controlled trial (Mackie et al., 2018) and five descriptive, non-experimental studies. The remaining articles consisted of two abstracts (Charles et al., 2016; Stewart et al., 2015), two published protocols (Werner et al., 2020), two discussion papers (De Hosson et al., 2020; Mackie et al., 2019), and an intervention mapping article (Mora et al., 2020).

Table 1 Data Extraction Results

Ten of the 12 articles presented a description of congenital cardiac transition-based interventions. Consistently, all cardiac CTP were characterized by the following themes: the need to transfer power of care away from the health care provider and onto the patient, and the desire to promote increased self-efficacy among individuals and increased social empowerment and knowledge among youth transitioning to adult health care services. All programs presented in the literature required numerous on-site clinic/hospital transitional care visits.

The transition care sessions mainly consisted of three components: an educational visit, small group session, and an administrative session. During the one-hour educational outpatient visit, which was facilitated by a member of an interdisciplinary health care team, an overview of health content, self-management behaviours, follow-up appointments, living with complications, and lifestyle related issues were addressed. Pamphlets and brochures were usually distributed, along with other resources that included diaries and clinic email and phone numbers to contact in case questions arose following the educational session. Video clips were also shown during these sessions. The one-hour educational session was followed by an all-day small (five to eight patients) group interactive session, for which patients were encouraged to bring their parents/caregivers. During these group sessions, dialogue between patients and families was encouraged and questions or concerns were addressed by an interdisciplinary health care team. Finally, all participants were provided with an administrative workshop/session, which usually occurred within three to six months following the all-day group session. This administrative workshop usually occurred onsite and provided information pertaining to accessing bank loans and insurance, as well as relating to other administrative, non-medical related issues. In many instances, the transition program finished with a synthesis of information tailored to meet each patient individual needs, as assessed by members of the health care team.  

Findings from studies that assessed the transition programs suggested older individuals (>20 years) had increased readiness for transfer to adult health care services, showing a significant need to better prepare younger patients for transfer. There was a risk for loss of engagement in transfer process among males, as well as for those individuals who were required to travel more than 200 km to access the onsite transition program. Furthermore, 50% of all individuals requested transfer-related information, while 55% actively searched online for this information. In addition, 90% of individuals not only requested transfer related information using social media forums, but also expressed a desire for mentorship and engagement with other patients/adolescents living with congenital cardiac disease.

Additional findings indicate individuals who were diagnosed and living with either moderate or complex congenital heart disease requested increased access to transition programs. These individuals tended to have less access to employment opportunities, and thus were also likely to have access to additional sources of health care supports. This population also tended to be more socially isolated and to have higher rates of depression and social anxiety. Due to the severity of their illnesses, many young adults living with congenital heart disease routinely expressed challenges related to normality, engagement in self-care, social integration, lack of independence and uncertainty for the future. Furthermore, researchers identified the theme of hopelessness among individuals living with congenital heart disease.

Discussion

Based on the review of the literature, exiting cardiac CTP was accessible only through engagement in onsite workshops/sessions, which tended to be in large urban centres. Thus, individuals living in rural areas were less likely to engage and/or continue their involvement in transition programs. Transition supports appeared to be available only within the short term, i.e., within six months of discharge from pediatric services. Moreover, many individuals requested the use of social media as an alternative to the delivery of face-to-face transition programming. This alternative forum could address the need to better prepare younger patients and individuals living outside of urban centres while addressing the need for social integration, normality, and the provision of access to congenital cardiac health care services over a long period of time (Gallagher et al., 2017).

Congenital cardiac transition blog (CCTB)

An alternative to onsite CTP programming is individualized cardiac congenital transition resources delivered through an online platform contained within a blogosphere, which is a global community of individuals who interact within a defined space (i.e., website) on the internet (Ferdig & Trammell, 2004) that allows for discussions and engagement among individuals transitioning from pediatric to various adult services. The intentions of this blog would be to create an online, interactive community. Currently there appears to only be one online intervention (DeMaso et al., 2000) that was designed, implemented and evaluated for the congenital heart disease population about 20 years ago, with the purpose of providing a platform for sharing of personal stories through online journals in which participants were required to relay their day-to-day experiences living with heart failure (DeMaso et al., 2000). Results suggested this intervention reduced social isolation by providing a forum for individuals to speak about their illness and their ability to cope with the burden of care associated with their disease (DeMaso et al., 2000). However, not all individuals actively engaged in the online forum and, in many instances, information that was being shared may not have been relevant or even accurate.

A blog is an alternative to standard online forums, allowing for interactions between all individuals transitioning from pediatric to adult services within a specific region. This type of medium can be created in such a manner to allow for the use of a facilitator who can function as the site’s moderator and/or counselor. This facilitator can ideally be a health care provider (i.e., registered nurse or psychologist) who specializes in congenital heart disease and who can clarify information while encouraging the free exchange of ideas within a civil environment. To facilitate participation, the facilitator can encourage the sharing of ideas and messages while responding to posts and comments. This individual can also routinely add comments to the blog to facilitate dialogue, correct misconceptions related to aspects of the disease and its management, and navigate the flow of the discussion and interactions between the participants. To assist with the flow of the conversations, the facilitator can, at times, post relevant resources in the form of updated research articles, job postings, and upcoming face-to-face or virtual events. This individual also can be responsible for coordinating “guest” bloggers to address concerns the participants may identify; for example, a career counsellor can post blogs relating to job interview preparation and networking skills, as well as job search strategies. This is of significance for this population, as many individuals living with congenital heart disease tend to be under the age of 50 and have precarious employment due to their illness experience (Chong et al., 2018; Raissadati et al., 2020). The blog can be used as a forum to create fun, interactive social activities that include encouraging participants to post a number of fun, quirky photos over a period of time or to create an ongoing themed link-up or face-to-face event (Kaplan & Haenlein, 2016), with the hopes of reducing social isolation and encouraging engagement among participants (Gallagher et al., 2017).

Conceptual design of the CCTB

The blog can be designed in partnership with a group of individuals diagnosed and living with congenital heart disease. Consistent with the principles of person-centeredness, a systematic protocol (Håkansson Eklund et al., 2019) can be used to engage patients diagnosed and living with this disease who are ready to undergo transition from services, as well as those individuals who have already transitioned, in the design and implementation of the blog. The resources, functionality and appearance of the blog will be responsive to individuals’ perceived preference, needs and values (Håkansson Eklund et al., 2019). Furthermore, the website that will house the blog should contain assistive technology to be responsive to individuals with accessibility issues. The website can also be designed to allow for easy access from a variety of devices that include phones, computers, tablets, and watches. Once the site has been created, it can be launched and advertised through existing congenital cardiac patient groups and at local hospitals with cardiac programs.

Evaluation of CCTB

A proposed quasi-experimental, one group-before and -after design can be used to evaluate this blog after its first month of implementation to determine basic traffic patterns and analytical statistics that include number of posts, quality of posts (comment on post, who responds to posts, type of response, questions asked, or rebuttal to post), number of times site accessed, when site accessed, and number of online conversations. Additional congenital heart disease-related outcomes (timing for assessing outcomes ranged between one to18 months) that can be assessed include career and job preparation knowledge, health-related quality of life, depression, and social anxiety. The site can also be assessed for a period of six months to determine patterns in engagement.

Conclusion

In conclusion, little is known about the transition from pediatric to adult care for patients with congenital heart disease. Currently, very few cardiac congenital transition interventions exist. These interventions appear to be limited in that they are only provided during an individual’s hospitalization, and do not address normality, engagement in self-care, social integration, lack of independence, hopelessness, and uncertainty for the future. An alternative intervention using an online blog is proposed to create an interactive patient community to provide improved transitional support for patients living with congenital heart disease. This intervention can be rigorously evaluated to determine its effectiveness in enhancing patient outcomes. If found to be effective, this blog will serve as a medium to support engagement among patients, as well as an educational tool.